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).