Tag Archives: ME/CFS

Thinking and speaking and the major obstacle of the phone.

I lose my voice on a regular basis- in fact I have no voice right now – and my husband rather likes it. Cheeky divil! (as m’gran would say). Then there’s the entertaining aphasia in which dishwashers become fish-dishes and disappearing boxes as my dd so eloquently relates. Along with this are the times when the words are there and I can’t get them in the right order to make sense, or when someone is speaking to me and they sound like the parents in Humpf “blah blah blah”. I know they are saying real words but I just can’t make my head work out the meaning. This happens more often  and is much worse when I’m tired or when I’m on the phone.

I slur my words like a drunk and mix them up so I can speak like Yoda.

vintage-hollywood-LUCY-on-phoneAnd what is it with the phone? I think it must be that the only clues my brain is getting is spoken language, and because I can’t see the person speaking, it’s much harder to understand them. There are plenty of times when this isn’t a problem at all, but at other times I have to really concentrate hard to understand what someone is saying to me and sometimes I say something banal in reply because I just don’t really get it.

I am not sure why, but for long periods of time I can behave like a sane person (my children may disagree). I can enunciate and use the appropriate vocabulary for the occasion. I sometimes have the skills I had when I worked, taking messages, handing out complicated information (in two languages) and generally looking and sounding efficient. Then out of the blue – it’s all gone. Worse still, I can’t always tell beforehand that it has gone , so I’ll answer the phone and be struggling to make sense or understand the other person.  The fish-man can phone and I am struggling to remember what a fish is, let alone whether I want to order any.

My children are remarkably patient. My husband has a wicked sense of humour over it but that keeps it from getting too scary. I still tease him about the night he came home to find no dinner cooked and me unable to string a coherent word together, let alone a sentence. He looked at me with that face he does and said, “I’d better get a takeaway.”

I’ve got an appointment with a speech therapist in October. She’s supposed to be assessing me for some kind of larynx dysfunction. We’ll see what happens there.

THIS SITE on Dysautonomia has just been shown me. It’s pretty good, clear info on the joys of having this silly illness. All I would say is the advice about salt should be taken with extreme caution; salt is for people with neurally mediated hypotension and low blood volume which usually manifests with narrow pulse pressure. Those of us on the other end of the dysauto scale with hyperadrenergic stuff going on; hypertension; or like me rapidly fluctuating blood pressure, and wide pulse pressure (had one of 80 recently YIKES!) should not be taking salt. unless a doc has noticed sodium issues and that needs proper treatment anyway.

I do get salt cravings- I know this happens with other dysauto folks too. It is more likely due to electrolyte imbalance than a genuine need to grab the Marmite. Try Diaoralyte instead m’dears. (Marmite tastes better…)

Hospital Appointments +++

It feels like the holiday happened an age ago. I have had, and still have, quite a few hospital appointments to jump through.

The poor Cardiologist was off sick when we turned up the day after we got back. Thankfully he’s ok now and I’ve been rebooked for early September. The following week I was back for lung tests.

Lung_function_test-SPLI had forty minutes of breathing to do. It was hard work!

First of all I had to do some resistance tests with the machine shown here. It’s the same machine I was on last time for more basic tests. This time the tests were to see how my respiratory muscles were working.

Then there was the “sniff test” which was to see how my diaphragm is working. (scoring 19 and 21 mostly. No idea what that means).

lungdif_s-300x241Then he went off and wheeled in a machine that looked like something from a 1950s scifi movie. Unlike the one in this photo it was beige not as new looking.

I think it was measuring lung volume and other stuff. Anyway, first tests were sitting up and then the really difficult ones were lying flat. I don’t have the skill for lying flat and breathing at the same time! I sit up at night now. If I end up flattened out my lungs wake me up demanding I sit back up.

So it was a case of do a breath – then sit up to catch a breath. The chair was like a dentist chair so it went up and down!

Glad when that was over.

Results to be sent to the Respiratory Consultant. We’ll see what he says.

Meanwhile he had referred me to a throat/voice person at a different hospital. I have a lump that I can feel in my throat, around the area of my voice box. It’s not painful or anything like that, but it is annoying. It effect my swallowing and I wonder if it’s the reason I lose my voice so much and the back of my tongue goes numb. (One of my weirder symptoms. Whoever heard of a numb tongue!) Also could be causing the ear pain/ irritation. Who knows?

He warned me the waiting list was long so I was surprised to get an appt for the end of September. Pretty good I thought. Then they phoned a couple of days ago and have brought my appointment forward to Tuesday.

Meanwhile today I saw the Rheumi about the possibility of Lupus. He was a bit odd. He doesn’t think I have Lupus but he had an armful of bloods done which was pretty good of him. He seemed to think a lot of it might be the Fibro. I told him I was contesting the ME dx and he said he doesn’t use the dx of ME but says CFS or PVF but doesn’t think either of those dx are helpful as fatigue is rarely the root problem.

Well I agree that CFS is rarely a useful dx as it was a politically made up one. I think there’s evidence of Post Viral Fatigue from serious viral  disease.

I disagree with him on ME. I think it’s very clear that such a horrible disease does exist. I just don’t think I have it (or I certainly hope I don’t. It’s bloomin’ orrible!)

He then went on to say he didn’t think I should be on so many steroids. He didn’t come up with what I should do instead. I had already told him my GP tries to not keep prescribing them but you know breathing isn’t an optional function. Anyway I am very fortunate to have found a good lung doc at last.

My heart rate and BP are looking better though which is good.

So far I only have one appt in September which is really good as I usually need a month to get the home ed rolling neatly.

Severe ME awareness today.

Severe ME dayA special day has been put aside to raise awareness, understanding and Remembrance for the 25% of ME sufferers who are very severely affected.

This article tells how the date of August 8th was chosen because it was the birthday of Sophia Mirza who died of ME after being abused by the hospital system and social workers who insisted she needed mental health treatment for what is well known to be a serious, life threatening disease. Sophia had an autopsy done thanks to the solid thinking of her mother and the medical examiner found from spinal fluid and other evidence just how desperately ill Sophia had been. As far as I am aware Sophia’s mother has not received so much as an apology for the shocking treatment her daughter was subjected to.

In the UK the 25% ME group work hard on behalf of those far too sick to campaign for themselves. On more than one occasion I have seen crass stupidity from those who should know better, saying that patients with ME need to stand up for themselves more – showing a complete ignorance of just how sick a large proportion of ME patients are.

Say a prayer for all those in the 25% group and for those who have been there or are heading there.  ME is no respecter of persons so add a little prayer of gratitude if you don’t have it.

(My situation: I don’t know if I really have ME or not. I was dx by a doctor who was more interested in spouting off the mantra of “GET/CBT” than in listening to why I had actually been referred to him – which was for worsening Fibromyalgia (more recent research is showing FMS is a form of hyperadrenergic pots, ie dysautonomia). I received the dx without my knowledge until my GP mentioned it in passing.

As Ramsay was the most well respected researcher into ME outbreaks across the work I tend to think he should be listened to. He insisted that those of us with a dx of dysautonomia should be excluded from a dx of ME. This was probably because he saw the symptom overlap as too great.

I was recently told that a doctor specializing in ME/CFS has suggested that as many as 96% of his ME patients have a form of dysautonomia. Perhaps if we were shifted to the Dys umbrella the seriously ill ME patients would get better research and care).

Back to the steroids, or not?

I was given a script for Prednisolone to keep by for those sudden onset emergencies. The idea was to help prevent my rather inconvenient (to me, the kids and the doc) sudden requirement to turn up at the GP for the nebuliser and   the inevitable script for yet more Prednisolone. The heat hasn’t helped my breathing. My lungs are having a hissy fit and while my dear ol heart and BP seem fairly stable (whoo-hoo) (for now – I am nothing if not a realist) my lungs are squeaking wheezing and waking me up at night demanding air. They are showing signs (again) of being too idle to bother to breathe unless I’m awake to help them. Honestly, you can’t get the organs these days!

The Big Pillow is back on the bed. This works a bit like calling in dad – the Big Gun- when teenage boys got a bit too big for their already over-sized boots and dad needs a word. So the Big Pillow keeps me more-or-less upright at night so I can breathe and then if I slip my lungs are quick enough to wake me up demanding better posture and more air.

Originally the pillow was a breastfeeding and baby nest thing so it’s big, and firmish. I recommend them for you fellow lung-lubbers.

Now, I hate taking steroids and up until recently I have also loved the little things. You see, while I am acutely aware of the nasty side effects and the long term nasties in particular thanks to a looooong history of taking steroids orally, intramuscular and IV I also am aware that they work like a minor miracle; not just on my breathing but on pain and that bone grinding feeling that goes with it.

As most of the side effects are part of my “normal” illness anyway I haven’t noticed much other than the weight gain and the moon face. I can spot a fellow steroidy by that face.

So, back to the question at hand. I have the Pred in my drug box. I am struggling to breathe and I have two reasons to take them. First – it might help avoid a doctors appt or an emergency doc appt. and second, we’re off on holidays soon and I don’t want to spend the hols doing a magical mystery tour of Scotland’s NHS provision. It won’t be good for the family.

My dh says everyone will take it in their stride if I need to sample the NHS up north. And I’m sure he’s right. But we are off with 5 of the children and a girlfriend. I would rather steer clear of stethoscopes and hissing masks.

Is that a good reason to take the Prednisolone? Because I’m a bit (ok, quite a bit) worried about wrecking the hols for everyone?

Who knew that taking drugs could be a moral or ethical question?

Having written all that my lungs have made the decision for me – back on the Pred.

On a side note, the Respiratory Doc has spotted that some of my breathing problems are not just asthma. He is a bit concerned that I’ve been on almost daily high doses of steroids for months and months and wants to separate out the asthma – that needs steroids and the other stuff that might need something else.

While there’s definitely the Lump in my throat around my voice box thing at the moment I am pretty sure it’s asthma.

Lung Specialist appt.

images (1)Off we went to the Three Toilet Seats on the Hill, otherwise, more properly known as the QE. I saw The Respiratory Consultant who is a Colonel in Her Majesty’s Forces. I must admit to giving myself the “talk” before we went. The “talk” consists of quiet practicing in being able to stand up for myself and cope with rude, ignorant doctors who give a very good impression of having either never been to med school or to have slept through it, while contracting a serious case of Narcissistic Personality Disorder. So, I was ready.

He was very nice, polite, sensible, knowledgeable and respectful! It’s not just the Prof who is good at his job!

The Colonel allowed me to explain what had been happening and because he was listening he was able to spot some of the things I thought might be happening. He accepted my claim that some of the breathing problems are orthostatic, in that I am more breathless when upright – but not wheezing. He wasn’t fazed by IST and Dysautonomia.

I tried to explain the difference between the “obviously it’s asthma” stuff and the “what is that?” stuff. He picked up on it straight away and talked about the sounds made when the voice box isn’t allowing air through! He described the sounds and problem and that was spot on.

I’m to go back for more tests. At the QE I’ll have tests to look at chest muscle function. That’s interesting as it would touch on ME. I still want to ditch the dx of ME because of the politics around it, but if it is shown that my muscles are part of my breathing problems that plays into the biomedical evidence for ME. We’ll see what happens. He also wants to see what my diaphragm is up to. If it isn’t working properly that too ticks a bloomin’ ME box.

Meanwhile I am to be referred to a voice and speech specialist at East.  Let’s see what she makes of my voice, swallowing and talking problems. The Colonel obviously thinks she’s a good’un so I think I might allow myself some hope there.

My previous tests showed asthma and something else, not yet definable. But today my SATS were 99! I’ve NEVER had them that good before! It’s interesting to see that when I feel better that the easily testable things like SATS, BP and HR also look reasonable or even good. It should mean I can measure fairly easily when it’s going badly and when it’s going better. Whether this will make life easier with doctors I don’t know – but, God in His mercy seems to be allowing me to see some real doctors at last.

So, more tests, awaiting voice and speech appt and I’m to see the Prof and Lupus Rheumi next month. I do hope all this is leading to some answers. I feel like I moved forward knowing I have a form of Dysautonomia. I want to remind the Prof about the hyperadrenergic tests and then we’ll see.

I know there’s no cure, but I can’t help a little hope that I could function better than this.

Ramsay’s Disease – the efficacy of Evening Primrose Oil and the Exercise idol (pt2)

Ramsay’s Disease is authored by Dr Simpson who has done years of research and Nancy Blake who has ME.

(Ramsay’s Disease blog entry 1)

Dr. Simpson points out the various studies that show the efficacy of fairly high doses of Evening Primrose Oil in enhancing the fluidity of blood flow.  Fish oils had also had some success, he says.  There have been studies showing that high doses of EPO can assist women with premenstrual tension. It has also been shown to improve luteal phase defect probably because of it’s action on prostaglandin. I already knew about the latter studies and this is why EPO made it into the BNF a few years ago – don’t know if it’s still there. Simpson doesn’t mention luteal phase defect, but then he isn’t writing about fertility problems, he’s interested in blood flow and capillary size in people with ME.

He proposes that “people who develop ME have the anatomical feature of smaller-than-usual capillaries in those parts of the body which become dysfunctional and manifest symptoms…” which seems fair enough,and might go some way to explain why more women than men are dx with ME, (and that’s before you take the different hormone balances into consideration) and then he continues with “after exposure to an agent which initiates changes in the shape populations of red blood cells.” And that leaves us with the mighty question what agent?

I don’t remember being ill before I became ill (if you get me) I didn’t have the classic “flu that never went away”. I didn’t even have the equally common “virus that went away and came back and then never went away” either. I was fine. Then I couldn’t walk and was in terrible pain and other weirdness; but nothing obviously viral.

If Simpson is right and small capillaries are part of the problem then that makes me wonder how many of us were harbouring the problem until something (I suppose the “agent”) triggered it. I’ve always had what adults around me called “poor circulation”. It means I tended to have colder extremities. But that was it. Nothing like the Raynaud’s I now have or the POTs rash and blood pooling or the purple feet and knees, as adverts of my dysautonomia. That’s new. But if I always had circulation problems then that would tick a Simpson box about overly small capillaries.

All of this would lead to poor profusion and explain the muscle fatigue – moving from aerobic to anaerobic at the least provocation; raising lactic acid and of course leading to a crash (PEM/PENE)

Simpson does not claim that taking Evening Primrose Oil could or will cure ME. He’s aware of the complex and just plain nasty side of the disease, but EPO could help blood flow and this should lead to some alleviation of some symptoms.

The lack of acknowledgement of much of the research and complete lack of follow up is frustrating.

At the end there is a discussion of some of the deliberate hurdles and obfuscation that has been put in the way of a proper diagnostic criteria and treatment plan.

As the author notes, if those people who came forward to take part in the much discredited PACE trials were excluded if they suffered Post Exertional Malaise (PEM) sometimes called Post Exertional Neuro Exhaustion (PENE) were excluded from the study then not one participant actually had ME! (cf loc 5185 90% Kindle edition)

The book ends with a very good commentary by Nancy Blake whose professional background is in psychiatry. She points out that a tick box approach to diagnosis is not a good way for medics to decide what is happening or how to help a patient. She also, rightly, points out that labelling people with ME as having a psychiatric disorder without any history of precipitating factors is not going to be accurate.

Misdiagnosing people with ME as having a completely made up dx of Somatoform disorder is deeply unethical. Ms Blake doesn’t challenge the existence of Somatoform disorder in her criticism of it’s use to label people with ME, but frankly as there is no evidence the disorder exists at all, you have to question the motives of the doctor who uses it.

She goes on to note how research is heavily hampered by the downright silly mess of diagnostic criterias available some of which, such as the most ridiculous one, the Oxford Criteria do mention PEM but don’t  have it as required.  This means lots of non-ME are misdiagnosed with ME/cfs as well.

She writes:

Fighting against this illness in the way that medicine and convention expect us to will ensure that we lose not only the battle it also the war – in the short term, we will get worse. In the long term, we may end up among the 25% who are completely disabled.”

I have to agree. I did what I was told at the beginning of all this and now I am much sicker, and more disabled than I think I would have been had I listened to what my body was telling me. There are so many other patients who tell the same story.

Further reading

A story in the Telegraph about a woman who died from complications of  ME

Ramsay’s Disease – ME as it was before the CDC’s politically motivated CFS dragnet was thrown.

I have a dx of ME, but I don’t really know if I have ME. The doctor who dx me did so by accident when I went to see him about the worsening symptoms of my already dx Fibromyalgia. I was getting sicker and sicker and wanted to know how to stop it. He was a truly nasty piece of work. and I came away, not only with no answers, but no hope. Thankfully I’m a tough ol’cow and I bounced back. But I am still left with the question; do I have ME? And this is coupled with the question, “What is ME anyway?” Ramsay’s Disease – Myalgic Encephelomyelitis and the Unfortunate Creation of CFS by Simpson and Blake is a good insight into the research Dr Melvin Ramsay  and Dr Simpson had carried out in England up to and beyond the Royal Free ME cluster outbreak of 1950. His work of blood 000-3d-model-1rheology showed very clear signs of a good biomarker test for ME even back then. His work, however, was sidelined as the psychiatric lobby, linked to the American Insurance Industry and British Government’s welfare cuts took over. A brief but accurate timeline of events shows some of the bizarre and unprofessional behaviours from members of the CDC in the 1980s but also notes a strange attack on people with ME by a couple of pyschs in 1970 (McEvedy and Beard) who tried to insist the Royal Free Hospital cluster and other cluster outbreaks of ME was “mass hysteria.”

♠ ♠ ♠

Nancy: Appropriate treatmet for ME should include a prescription for rest immediately upon becoming ill…” (Kindle loc. 3454 60%)

The understanding that patients with ME did(do) better with enforced rest at the beginning of the illness has been repeated over the years, most notably by Dr Nancy Kilimas (an HIV/AIDS specialist who has done lots of work on ME, especially when she noted that her patients with ME were as sick from the start as her end stage Aids patients). Even anecdotally I can see people with ME who have gone into remission after having gone to bed when they became ill. Research into patients who have gone into remission is sadly lacking; but then research into people with ME is sadly lacking altogether.

Studies suggest that those who get ME younger have a better chance of getting good remissions. Sadly this simply isn’t the case for many children and teens with ME and some of the deaths from ME are in those young ones.

The central theme of this book seems to be the blood rheology results showing that people with Ramsey’s criteria for ME have misformed erythrocytes (red cells) which in turn leads to poor profusion, especially in the brain. The problems with blood flow offered a good explanation for a lot of the memory, language and other neurological symptoms of Ramsey’s ME. Strangely (or not) Simpson a researcher in this area had problems getting his blood rheology papers published despite the slides showing the cup shaped cells. He found that editors of medical publications couldn’t accept red cells could change shape (leaving me wondering what they made of Sickle Cell and Thalassaemia).There have been some papers published on this subject not related to ME Considering the appalling quality of much of the so-called research into CFS and/or ME that is published, it’s a bit odd that Simpson’s papers weren’t published.

More recent findings back up Ramsay and Simpson’s blood findings and this coupled with studies showing small capillary problems points right back to their work again.

Having reached the part in the book where patients climbing three flights of stairs to reach the doctors office and then having very cold hands and blurred vision, I am reminded that all ME patients are not the same. There’s no way I could make it up three flights of stairs!  He goes on to say

Although much was written about “autonomic manifestations”, in the terms of Ramsay’s criteria dysautonomia would have excluded a diagnosis of ME – but if there were a systemic problem of blood flow it could anticipated that capillary blood flow in the nerves of the autonomic nervous system would be impaired.”

I am not sure whether the author is saying that those of us who have a dysautonomic dx can’t have ME or whether the blood flow problems found in Ramsay criteria dx ME patients lead to ANS problems anyway so ME and dysautonomia go hand in hand. There’s a lot of us with dual diagnosis – and getting diagnosed with any dysatonomia is difficult because most doctors haven’t a clue it exists or what it is.

Recent findings in research into women with fibromyalgia seem to back up the blood flow findings of Simpson et al (this report in Medical Daily on the research is clear – you can mute the annoying advert in the sidebar. You might also want to skip the ridiculous cliche “patients aren’t lying after all-shock” introduction.)

I’ll write more later. It’s time for a cuppa.

Further reading:

Erythrocyte Rheology article in BMJ (opens Pdf)

The Fish-Dish (my daughter’s observations of my aphasic moments) (Nb. Please go to the toilet before reading this).

Drug Juggler (pt II) and CfSAC testimonies for May 2013.

545749_454380617911565_1095774106_nA lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!

Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.

On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.

I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.

inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh

ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)

Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr

oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie.  I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible

Positivity is Not a Cure

and didn’t really help the pain that much either.

One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.

One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!

The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.

The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.

Over the Counter stuff: I take CoQ10 and Magnesium.  A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM

Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.

Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.

THIS is a great overview of the Spring 2013 CFSAC meeting You can read Jenny Spotilla’s excellent and rather heart breaking testimony HERE as she shows a severe drop in funding for ME/cfs which is beyond shameful as more info is coming through showing how sick many people are, and how many are dying of this horrible disease.

Amy Squires Testimony

Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)

Mary Dimmock’s testimony

Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!

While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.

ME/cfs awareness month ends tomorrow. But the disease goes on.

Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!

The vid maker and a discussion of the vid is found HERE at DINET

I am still awaiting tests for hyperPOTS to go with the IST.  As I’m already on Ivabradine I guess there’s no rush.

ME/cfs, Voices from the Shadows.

Today is the last day of ME/cfs Awareness month. I’m posting the introduction video for the documentary “Voices from the Shadows” that tries to give a voice and raise awareness for those with Severe ME. Please pray for those at this end of the disease and for all of us who are heading that way with some serious trepidation.  The Intro is less than 5 minutes. Watch and pray.

If you know someone with ME please take the time to watch this. Don’t listen to the MSM. They have no idea.

Later I’ll post part two of drug juggler.

Autoimmune diseases on the rise rapidly. No one seems to know why and CFSAC meetings…

Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus,  and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.

Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma.  Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.

The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.

This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.

I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency.  I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.

I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!

The call for the Canadian and International criteria to be made the criteria for the disease goes on.  It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.

The Drug Juggler (part 1)

The person who takes medicine must recover twice: once from the disease and once from the medicine.”

Dr William Osler

Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net.  When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection.  So drug juggling becomes a way of life.

P1020587Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying  vision there is a danger of accidents.

So organise the meds. Make sure you know what you are taking, how much and when.  You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!”  My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.

So I have bought a makeup box. Don’t laugh – this is something you can carry around without

P1020589

it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.

Knowing you can just take what you need even with the worst possible brain fog is good.

Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds  and the little top boxes will hold (in this case) six nights worth of meds.

The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too.  This will make things a lot easier if you get shipped off to hospital.  The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.

Side Effects

Another quote from the redoubtable Dr. Osler

One of the first duties of the physician is to educate the masses not to take medicine.”

We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day!  This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.

Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.

Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?

Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.

You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.

Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.

Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.

That’ll do for now.

In gratitude for family and friends.

Psalm 88 comes up often at Compline in which the psalmist faces his ill health and gives God a bit of telling off. One line stands out as, because of how sick he is he says, “You have taken my friends away from me, and made me repulsive in their sight. I am confined and cannot escape.” (Ps 88:8).

Go to any place on the internet where people speak of their experiences of serious chronic illness – especially not so well understood ones like fibromyalgia, ME (cfs) or dysautonomic disease like PoTs, IST and all the rest that goes with them, and you’ll see the same stories over and over. So many people tell of how friends and family not only abandoned them, but actually humiliated them over how sick they were.

The most common idiot thing to say is “But you don’t look sick.” WHAT does sick have to look like? I mean, most of us exhibit all sorts of weird “sick” signs. Perhaps the fact that I twitch and jerk randomly, have colour changing body parts; have lost the skill to both move and breathe at the same time, and of course there’s the in-yer-eejit-face wheelchair, has prevented most daft comments (Doctors are another species so I don’t count the bizarre and inhuman things they say).

Story after story in which the person struggling with the disease that has stripped so much of their life away, has to face being rejected, taunted and ridiculed by their own family and friends. What on earth is going on?

Many people lay the blame at the feet of doctors who have been rude and dismissive; which should be a matter of deep shame to medics, but isn’t. Family members still stuck in the idea that “doctor knows best” then feel permission has been given to behave in the same way and so the nastiness spreads. Then there’s the ability to wiggle off the hook of having to love and care for another person. I am sure not wanting to feel responsible makes a lot of people cruel.

Having a chronic disease is a bloomin’difficult business. It’s bad enough when support isn’t there when it’s needed, but to be actively abused for being ill has got to be the worst possible experience.  THIS BLOG POST sums up what it’s been like for way too many people. Research from a couple of years ago shows that one in ten suicides are because of chronic illness – but read any post by someone feeling suicidal with chronic illness and almost always it’s nothing to do with how sick they are, but how others are treating them.

I am so grateful that I haven’t been through the level of rejection and stupid behaviour that so many others out there speak of. I’ve lost a couple of fair weather friends and family, but most people have been fine with me and very supportive.

I am quite sure plenty of people in my life have no idea, or only a vague notion, what chronic illness does to me, but I don’t mind that. Why should they have to understand it? But no one has been cruel or unkind to me, thank God.

Like nearly all FMS/ME/Dysautonomia patients I’ve faced a barrage of rude, arrogant and downright nasty medics. That’s more than enough to cope with thank you very much. I don’t need more. I don’t get why people feel the need to dismiss the suffering of others. What’s that about exactly? 

Ten years into this hideous set of illnesses I’d be very tempted to use rude words in response to someone who tried to pour salt on my wounds.

My oldest children have been brilliant right from the beginning of this. They’ve had to contend with a lot from me and deal with their younger sister being extremely ill for the first three years of her life too.

I am very grateful that I have good Christian people around me who have a good Christian attitude to life.

b213-thank-you-cheery-lynn-doily-die-4674-pSo to all you friends and family who have never said “But you don’t look sick” or “You should try and get out more,” or “Have you heard of so-n-so the brave cripple..” or “have you tried this miracle cure?” or  whatever other useless, unhelpful thing,  I just want to say THANK YOU.

ME/Cfs, Fibromyalgia, Multiple Chemical Sensitivies, Gulf War Syndrome AWARENESS DAY

62608_351128568321966_500473882_nMay is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible.  The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.

The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.

But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).

Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.

But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.

A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.

Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.

Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.

Theres good research into methylation and some into endrochronological aspects of our disease.

A lot of time and money has been lost (stolen even) but we can work together  and make up for all of that.  It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.

People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.

Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.

 

Against the “who sinned” approach to ME/cfs and fibromyalgia.(or any disease for that matter)

I heard a doctor of some description on the radio say that the reason so many people have diseases like Fibromyalgia and ME/cfs is because we are angry and unforgiving people. He didn’t back his extraordinary claim with any research, but he put it out there as if it went without saying. When asked if something like scholiosis could be caused in the same way, he didn’t think so; but didn’t explain why.

What I will call neofreudianism is causing a great deal of damage in the care of people with all kinds of chronic illness. it’s psychobabble with no empirical scientific value at all; but much loved in political circles. It is simply unethical and has caused terrible damage to the proper funding of research and the proper care of patients with these diseases. Patients are being denied tests and treatment as well as facing shockingly poor behaviour from medics and it all seems to be hooked on the politically motivated approach to trying to undermine the seriousness and reality of the diseases. It’s only relatively recently that the CDC have admitted that ME is a serious life threatening, life shortening disease.

There is, thank God, a growing body of research that shows the biological roots of FMS and ME and some excellent work on comorbidities. We are seeing FMS more tightly linked with autonomic dysfunction and adrenal dysfunction. Most of us have at least one dysautonomic dx such as some form of POTS and/or IST with other orthostatic disorders.

ME patients are shown to have all sorts of nasty viruses as well as MAST Cell, EDS and Mitochondrial disorders.

There is a growing number of us being dx with Lupus, Lymes and other serious disorders to go along with the already hideous  problems we face.

Despite all this, most of the people I know with FMS/ME/POTS/etc etc. are happy, well balanced and forgiving people. The fact is many many of us have faced the need to forgive (mainly neurologists) since becoming ill. The anger, resentment and sadness I’ve seen expressed as come as a RESULT of being so ill and the horrible behaviour of others towards us just because we’re ill. I don’t know anyone who became ill because they were angry with someone.

I do know someone who carries a lot of anger and isolation who has scholiosis. I don’t for a minute assume her illness was caused by her anger. There is no evidence to support such an idea.

It is bad enough being chronically ill, coupled with a shocking lack of well funded honest research, without having someone who patently knows nothing about the illnesses spouting misinformation on the radio.

How could FMS or ME be a result of anger and unforgiveness when it occurs in clusters. More nurses get it on average – are we a more angry bunch? It’s ridiculous to try and tar us with this brush. 

I have emailed Catholic Answers and asked for a retraction on air. I hope they do this. I do love Catholic Answers; it’s a well put together and usually very honest and accurate program. This is a one off hopefully and one that I pray wont be repeated.

It is not because we are a bunch of angry unforgiving grudge bearers that we are so ill. We just have a disease, like other sick people. We should be treated with the same respect.

The stigma of ME/cfs. It’s a mystery.

I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.

photo-from-we-campaign-for-meThere should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.

Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.

There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.

A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with.  The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.

Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor.  As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them.  She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.

Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.

She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.

I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe  Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.

WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.

The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label.  While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?

There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much  spite.

And of course lies.

Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think  that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.

When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.

Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do.  No one deserves to be lied to about how their chronic illness is going to go.

Interview with Prof. Dr. de Meirleir on whether ME/cfs is a disease.

Transcript: This is the first of a number of videos of the interview with internationally renowned ME specialist Prof. de Meirleir.

Continue reading

Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.

Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.

Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.

My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish.  The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.

I had a whole list of bizarre and unheard of words for a watering can.

I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.

Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!

I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.

While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.

I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating.  But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.

I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true.  Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.

And remember, you’re not alone in blurble-flurble-dingbat-undermender.

House of Lords debate on the PACE Trails and the lack of care in the UK for ME/cfs patients.

I am posting this here for those of you who are interested. I know, more or less, how it went down and I just can’t face watching the thing. I have huge respect for  The Countess of Mar and wish more people were like her.

The MEASSOCIATION has the vid and TRANSCRIPT.

I am particularly disgusted (but not surprised) at Robert Winston’s response. He obviously hadn’t a clue and hadn’t bothered to listen either. I believe he’s in the eugenicist camp anyway, so he wouldn’t much care about lesser being like ME patients. Once killing disabled unborm children is ok, there’s little left ethically really.

Overall the standard of debate here was dreadful. I can’t believe the intellectual laziness and refusal to actually look at the problems with PACE.

The Business of Post Exertional Malaise. (PEM)

Post Exertional Malaise or PEM as it’s called, is such a major sign and symptom of ME it is seems it should be the primary box to tick. If you don’t have PEM, you are most unlikely to have ME. It goes hand in hand with exercise intolerance. Obviously a person who can tolerate aerobic exericse doesn’t get PEM. But there are illnesses where a person may have exercise intolerance (COPD and heart failure spring to mind) but don’t have PEM.

So how does PEM manifest itself?

It is, in essence, a state of collapse. The patient is usually in a great deal of pain that many of us describe as a bone pain. It does feel as though your bones actually ache. There’s extreme brain fog with this so that you can’t think straight at all, or express yourself. In my case I quite often can’t speak or can’t speak clearly or with proper words.

Vision and hearing can be affected. In my case I tend to loose perception and get  tunnel vision and photosensitivity. I become very sound sensitive, but others loose hearing.

The worst part (IMO) is cyclical vomiting. I’ve only had this a couple of times thankfully, but it’s the most painful, exhausting, horrible thing.

One of the less horrible symptoms of PEM is the inability to stay awake. When I’m crashed badly enough I just fall asleep or semi-asleep. My body does it almost like switching off. Unfortunately this is not always the escape you might hope for. More than once I’ve dreamed I’m in a huge amount of pain.

This crash can last from a few hours to a few months. I will never forget the crash I had three years ago which lasted just over 6 months. It’s not something I want to repeat, so why those in the pyschi school want us to do so is beyond me.

When certain luvvies in the psychi industry talk about patients “fear of exercise” as though we are lazy twits who just need to work harder, they never seem to get that we KNOW what can happen because all of us have had it happen to us. Those luvvies think we should be barmy enough to choose, quite deliberately to put ourselves into crash. As this has killed a few patients (that Labour MP comes to mind) it seems like a ludicrous approach.

The increase in pain with PEM has been shown to be the muscles hanging onto lactic acid. Mitochondrial defects prevent the proper use of oxygen in the body. For those of us with lung disorders our oxygen SATs drop out quite often anyway and with the extra broken bit of mito dysfunction our bodies don’t process oxygen the way they should – and we crash.

There is a great deal of biomedical research explaining why we are so ill. If only Lord Winston and his cronies could be bothered to actually READ some of it!

Getting some medical attention. Private or NHS….(and Bob Millar’s fight for Ampligen)

I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.

After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check.  Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.

I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.

POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…

So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)

I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.

So, it’s been a right game trying to get tests, let alone treatment.

Well the troops are rallying. More than one person is offering me the chance to go privately.  I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!

Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.

With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).

So what is my plan of action?

I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.

I also want them to check out baraflex failure.

I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.

It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients.  It would be good if there were dysautonomia specialist clinics – I can dream!

However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.

Keep him and his family in your prayers.

The fight for Ampligen is on.

UPDATE: sadly, yet again the FDA have refused to approve Ampligen for ME patients. They are asking/demanding for Phase III trials to be done. This is massively expensive and I am unsure how Hemiphrex are going to do this; especially as there are some complications in the Hemiphrex finances apparently.

Can’t help wondering why approval can’t go ahead with “yellow slips” for this drug now it’s passed Phase II. I think there are plenty of ME patients who would be willing to risk it considering how horribly sick many people are.

The fight continues.

 

Over the next two days the FDA (Food n Drugs Admin in the USA) are going to hold a webinar on  Creating and Alternative Approval Pathway For Certain Drugs  Intended to Address Unmet Medical Need.

There is some understandable concern that this is more smoke and mirrors and more stalling from the FDA over approving Ampligen for patients with severe ME/cfs. I don’t think I have stumbled upon a disease this serious that has so much bizarre politics surrounding it.

There is no doubt that ME is a very nasty complicated disease and there are plenty of co-morbidities to add layers of complication. Very few people with ME only have ME. Most of us have other stuff like FMS, PoTS, other dysautonomic problems. We have compromised immunity and endocrine abnormalities. I don’t really blame doctors blanching when faced with someone who has such a shambolic and system wide disease set. (I can’t see this as one disease it’s a multitudenous mass)

Of course one of the major obstacles even in America where at least there is the International consensus diagnostic criteria – which outstrips the ridiculous Oxford Criteria here in the UK – there is still no definitive narrowed judgement as to what ME/cfs actually is.

The daft name Chronic Fatigue Syndrome came from the CDC in America back in the ’80s when, for reasons that have never been clear, they were hell bent on not helping the patients affected in those cluster outbreaks (See Hillary Johnson’s tome for the full story; but even she couldn’t work out why the CDC staff behaved that way)

There are a number of biomarkers being put forward for the disease. The primary one would be the Post Exertional Malaise (PEM) which can be measured in muscle biopsy and VOX2 Max tests (that is oxygen consumption)

Other biomarkers are mitochondrial dysfunction and Mast Cell reactivation.

Then there’s EBV reactivation antibodies, Coxsackie virus, CMV and a whole lot more.

421435_447018611982695_518522216_nThe rates of heart failure, kidney failure and bizarre forms of cancer are much higher in ME patients (and life expectancy is 58 as opposed to 82 in the general population and this is a massive improvement from a few years ago when heart failure and ME gave a life expectancy of 46/7.

Coupled with a quality of life that has been measured as worse than those with COPD you can see why so many patients are begging for a chance to have this drug (or any drug that might work!)

A doctor once said to me that people don’t die of ME, they die of something else. It’s a bit like saying the 1918 flu epidemic was fine really because no one died of the flu. No, they didn’t, they died of pneumonia or other opportunistic infections. The fact is, however, that none of those people would have died if they didn’t have flu.

People don’t die of HIV, they die of the opportunistic infections.

There is a strongly supported hypothesis that CFS should be renamed CIDS or CFIDS; Chronic (Fatigue) Immune deficiency Syndrome.

Pray for those who are fighting for Ampligen to be approved. There are people so ill they were bedbound until they received Ampligen in trials. It might not be a cure-all for ME/cfs/cfids/whatever-the-hell-this-is but it certainly helps some people.

It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

H/T Living With Bob blogspot

I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.

I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home.  Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.

She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.

I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.

So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.

This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better.  I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.

I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.

Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.Hydra

But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.

If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?

PS Dysautonomia Prison has changed sites so this is the new site place

Dr Julia Newton’s research in the UK!

In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.

Dr Julia Newton’s lecture with slides is available here. This is the same lecture given at and Action For ME meeting. She entitles it Standing Up for Fatigue after the brief intro she starts talking at 2 mins 6 secs in.

A Phoenix member has worked hard to provide a pdf transcript.

I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!

Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.

Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.

Dr. Snell who has a background in sports medicine has done some fascinating research on this area.

There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.

Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.

I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the  Professor’s sec would phone me tomorrow. I’ll be amazed if she does.

I am awake during this afternoon’s crash which is better than it has been!

free book on ME/Cfs/Cfids whatever you call it. I call it Hideous. And an unchivalrous knight.

There is a book that apparently ME/cfs folk think is very good and it’s going to be free next weekend  You can get it HERE in USA and HERE in the UK It’s also available on Amazon Library if you have a kindle and Prime membership.

759870E8D080C63EE0401BAC7101193D-c1I’ve not long got back from my chiropractic appointment. I know my GP doesn’t approve, but it really does help me. It’s not a long term solution for someone like me, but no one has pretended it is. However, just having those few days, sometimes up to two weeks where I am not so shaky and trembly; where I can stand up without tipping over, swaying; where my vision is clearer (not sure why that happens, but enjoy it while it’s there); Where the afternoon crash is not such a nosedive and the pain is less, down to 1 or 2 on the pain scale. It’s nice.

Today he gave me extra needles and he adjusts the treatment to how ill I am. I appreciate that a lot.

There are a lot of snake oil salesmen out there. More so thanks to the shocking lack of tests, treatment or basic care offered for ME/FM and dysautonomic patients on the NHS. I have come across many patients who have spent money they couldn’t afford or didn’t have trying to find some relief from all this and they are still very sick. I am fortunate that I have found some help with chiropractic treatments.

A petition was opened asking for the knighthood given to Simon Wessley to be removed. Wessley has done a great deal of work in the UK which has made sure patients are labelled with “false illness beliefs” and the “it’s all in yer ‘ead” attack most of us have faced. Thankfully the biomedical research is still happening in America, Australia and Denmark among other places. Lots of new answers are coming forward which explain why we are so sick, and there are some hopeful drugs out there. Amligen is still in play.

Wessley has demanded the petition be closed and so it has been. Those who set it up are hoping to find some free speech elsewhere. While I personally think the shutting down of a legitimate petition childish and rather nasty when you consider the lack of voice patients have, all is not lost. You can read some of the comments from the petition here.

I tend not to believe petitions do much good. We had a few going to support the intrinsic rights of families to home educate and the Labour Govt made it clear they couldn’t care less about rights or public opinion, unless it suited them. The same still goes or people like Wessley would be disciplined not rewarded.

Wessley’s GET made me much much sicker today than I would have been if I’d been given the Nancy Kilmas advice of bedrest. If I had rested in the beginning, as many patients who are in remission now did, I might be (though it isn’t certain of course) in remission. I read the research far too late.

So if you are reading this because you are newly ill or newly dx with one or more of these hideous diseases, don’t do what the doctors tell you until you have read the research and done so with great care. Some of the stuff is difficult to understand, but some of it is clear and straight forward.  There are some great people out there who understand the complicated stuff and are willing to explain it.

Take charge of the disease, don’t let it take charge of you; and sadly you will have to treat what doctors say with extreme caution.

The Lucy Pevensie effect. ME patients are not lying.

tumblr_m3tcyn6wMR1qimdmqo1_250Lucy Pevensie is a character of the C.S,Lewis Narnia books. In the first book, The Lion, The Witch and the Wardrobe, Lucy has returned from Narnia and tells her siblings about it. They disbelieve her. Then Edmund visits Narnia too but denies it while Lucy is faced by a wall of disbelief and runs away crying.

The old Professor of the house asks the older two Peter and Susan, who is most likely to tell the truth, Lucy or Edmund. He then suggests that even if her story seems unlikely at first they should believe her.

ME/CFS and fibromyalgia are like a dark Narnia where the witch of a hideous disease has control. We explain what we are experiencing and like Lucy we are disbelieved. Many doctors behave like Edmund. They must see how sick their patients are but they want the Turkish Delight offered by bad bone idle medicine and so deny there is anything wrong.

I have been listening to lectures about more recent research into fibro and ME/CFS and something that has come up (again) is that patients not only lose their abilities, jobs and receive little care, but that they lose family and friends. People can’t be bothered to stick around someone who just doesn’t get over it. Many of us have faced the sense that doctors think we are making it up.

Dr. Stuart Drescher PhD, himself an ME/CFS patient talks of the conversation over secondary gains. Back in my nursing days we spoke of secondary gains, mainly with what my friend called “the worried well” who did not wish to get well in case they lost something of the attention and care from family members. In real life, we rarely came across patients like this, though I did personally have a patient who insisted she couldn’t get well or her son would go off and have a life. Ouch. Most patients, whether in the “worried well” camp or in the seriously mentally ill camp wanted to get better. In fact most patients lost so much that if there were any secondary gains (and there rarely were) they were drowned out by the sheer number of losses in life, not to mention the guilt they carried for the impact their illness was having on others.

The same goes for any serious long term illness. We lose so much. We lose our jobs, we lose our basic abilities. Many of us find standing up bloomin’difficult. We can’t do so many of the things we used to do any more. We lose a lot of dignity as we struggle to keep going. Some of us have the indignity and gross inconvenience of having to use a wheelchair. (I am grateful for my wheelchair because it means I’m not housebound, but the world is not designed for wheelchairs – ask any mother with a buggy).

I wonder if doctors really are as innocent as Peter and Susan when they refuse to believe patients or whether (as I’m afraid I suspect) they are really a bunch of Edmunds who know very well how very ill people with ME and Fibro are but they just don’t want to be bothered to deal with the shambolic and complicated disease, particularly when it might not be politically expedient. When those who have been the most obstructionist in allowing research and care for people with ME/Cfs, veterans with what has been called Gulf War Syndrome and for some reason dragging those with fibro into the dark, get knighthoods, it’s hardly surprising that medics feel the pull of politics over “do no harm” in medicine. (Coupled with something like and OBE for a medic who performs abortions, we can see how those who push the’ life unworthy of life or care are politically lauded).

How many family members who have walked away do so because they believe the person with the chronic illness is making it up, or because they just don’t want to bother with it?

336794-performing-seal-balancingA friend of mine was talking about how she thinks she is “hard” and that people won’t ask her for help, even when she would be willing to support them. In fact, as I pointed out to her, she is one of the most supportive friends I have.(I have other very supportive friends too) She sees me very regularly, so if anyone was going to get sick to death of my illness it might be her, but she doesn’t. She doesn’t over dramatise it, and whisper behind her hands about it, but nor is she dismissive. I don’t have to think like a performing seal when she’s around. She just accepts that I’m a bit bust and even jokes with me about my weird and less than wonderful symptoms. I love that.

We aren’t lying. We aren’t making it out to be worse than it is. We aren’t nearly as stupid as we look. And we don’t balance balls on our noses – not even in a Rombergs.  :P

POTS, ME/cfs, Dysautonomia. FMS: My 24 hour ECG – did it show POTS? PS FDA meeting over Ampligen

On Thursday I went to the hospital to be wired for a 24 hour Echo Cardio Gram. The first thing they did was a short 12 lead ECG with me lying on the bed. This showed that I was tacky already – but I had just wheeled myself into the room. The reason I can’t use my shove-it wheelchair myself properly these days is how horribly tacky I get when i do.

24hourecg_-N0030866Then they put a three wire ECG monitor on me. This was stuck on in three places and I was to wear it until the same time Friday. Then I had to return to the hospital to have it removed.

The kindly Prof, has promised (bless his cotton socks) that he will do all he can to help me avoid the hideousness of a tilt table test.

I’ve come across more than one unfortunate POTsie who has been through the torture that no terrorist has been given, four times before getting a definitive dx.

So, to avoid this nauseating, black out and fainting inducing NHS-theme ride, I was to make sure I made myself as tacky as a brass

45311_284215781699656_1476221922_n

pineapple for the ECG. Thus the Prof instructed me. Thus I obeyed.

So I spent Thursday doing washing, cleaning the house, cooking and making things and being up and down as much as possible. I hit well over the 125s and even registered a 132 on my finger pulseometer. So I hope that was enough.

The dx of POTS is basically this. You must have had problems for more than 6 months. From a lying down to standing your pulse must go up by more than 30 beats per minute or be over 120 within ten minutes of being upright. Easy.

For those of us looking at a dx of either hyperadrenergic or combo POTS we will have a rise in blood pressure to go with it- like badly matching socks. More commonly in POTsies is hypotension, but some of us like to be different. In my case I get massive spikes in BP with the occasional sudden drop to just below normal. This means I never need to spend money on a theme park ride. My body provides the Apocalypse experience without me needing to stand in a queue or spend any money.

60018_545327948830483_1336223284_nAnyway, I hope my pushing my limits to crash means I will quickly get a dx and some treatment. I am realistic and know there is no cure, but at least for POTs in most of it’s lurid flavours there is some kind of treatment.

If having crashed out so badly I STILL can’t get dx pleased be warned the “brave cripple” will turn into a raging ranting maniac. My patience with the medical profession ran out a very long time ago.

THIS ARTICLE explains quite a bit.

Get the low down on Hyper POTs here. There’s an amazingly foggy-brain blowing thorough overview HERE

So presuming the tacky is clear enough that I get the dx of POTs then what kind of POTs do I have? Going by a number of symptoms; hypertension, out of control asthma and breathlessness, tremour, shakes and twitching and jerking.

bost body

Overview of my BP, Pulse (blue) and pulse pressure(purple). You can see how sometimes things are better than others. Another typical POTs thing,

I am hoping that as the Prof mentioned testing my “flight and fight” responses that the NHS do at least allow for epinephrine and norepinephrine tests. I doubt very much I’ll get standing dopamine tested or Mast Cell tests. Neither do I expect to be tested for the rarer forms of EDS even though there’s a chance that is playing some role here. Chances are his F&F response test might be slamming a book shut near me. That seems to be the level the NHS is at these days.

As more recent research shows Fibromyalgia overlaps so precisely with Hyper PoTs I assume I have hyper or combo (because of the sudden drops in BP and the occasional very low pulse pressure around 1o).  Like DysGirl I have fluctuating pulse presure. Sometimes normal, Sometimes too high (above 50) and sometimes too low (below 30).

And now all I have to do is wait. And very probably chase up the results and remind the NHS machine that I exist.

Please add an extra prayer or two for patients with CFS/ME as tomorrow there”s a hearing with the FDA (Federal Drug Administration in America) over  whether the drug Ampligen should be approved for the treatment of CFS. It’s looking like a rocky road ahead, which is nothing new for patients with this disease. The initial negative approach caused the shares of the drug to suddenly drop by 45% which only reminds us that patient need and care is not the priority ever.

However this conclusion from the FDA prelim review has also been released.

CONCLUSION from FDA prelim review
“In summary, CFS is a serious, life threatening and unmet medical need. There are currently no FDA approved products specifically for the treatment of CFS. Ampligen has the potential to be a positive therapeutic option for patients with CFS who do not have an alternative to directly treat the condition. Given the overwhelming physical and cognitive health issues; the decrease in activities of daily living and overall lack of quality of life associated with CFS, Ampligen clearly represents a clinically meaningful advance for a significant unmet medical need, and the weight of evidence supports FDA goals to advance treatment for chronically ill patients with severe debilitating, life threatening, conditions such as severe CFS.
It can be stated that the burden of the symptoms associated with CFS is greater than any risks associated with Ampligen, since a CFS sufferer’s life may be at risk for years of debilitation often followed by premature death.”

Please do pray. As things are there is very little treatment for this. Many people are bedbound, very debilitated and desperate.