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

May 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.

It’s time to stop annoying my children.

A few things have happened this last week or so that have conspired to make me stand back and realise that it is time I stopped annoying my children. (Well, perhaps not completely…but…)

The first two things that happened were my oldest daughter went to stay with a friend for a couple of days and a friend of mine was writing an essay on the subject of “Loss” as part of her NCT training.

Iona, going away for a couple of days in no way bothered me at all. As a mother, knowing where my daughter is/was I was relaxed. It didn’t occur to me that the same wasn’t true of her.  Meanwhile my friend’s battle with her personal fears about losing a child, or anyone she loves, particularly if it was sudden, as she wrote her essay had also surprised me. I hadn’t known she struggled with this fear. I don’t think this is an irrational fear, a lot of people go through it and often, as in my friend’s case, it is rooted in a soul wrenching event from the past. Taking the opportunity to face it through the essay showed real courage. Most people – especially British people I think- prefer to duck these issues.

So, why did these two things conspire to make me think about my own behaviour?

Well, Iona came home with her friend and I was sitting there unable to breathe. I’d had the day to myself as Heleyna’s godmother had taken the children shopping and brought them home with lots of new clothes. I had decided to use the quiet to have a shower, only I couldn’t make it upstairs, so I gave up.

I had already been to the doc as an emergency a few days before and had been booked in forrenal and cardio bloods in another three days so I got it into my head that I could hold out to then and see a doc when I went for bloods. Yes, I was being utterly irrational. I had allowed my hatred of going to the doctors to over-ride any good sense I might have.

My daughter was cross. She put her foot down and organised me another emergency appt. She called the taxi and asked her friend to stay with the children.

Off we went. Then she had to arrange for my son and daughter-in-law to take over from her friend while she stayed with me at the docs as I was on the nebuliser. To be honest, I felt so ill, but I was squirming with embarrassment that Alex and Anna had to come over for the children. Why? I have no idea. It’s not like they would resent having to help out.

But this is one of the reasons I try and avoid doctors. I have to struggle with a taxi and alarmed drivers who prefer their fares to be breathing properly it seems, and someone has to be there to take care of the younger ones. It might not seem like much; but when you are very ill and have brain=fog to boot, it feels like a massive legistical nightmare.

Iona then said something, that right then, I didn’t really appreciate. She said she knew she would face a problem when she got home because I was just finishing the steroids before she left and they weren’t helping. A while later I realised, that instead of having a great, relaxed time with her friend, she was thinking about what she would face from her recalcitrant sicko mother when she got home.

And then it occured to me that the reason it hits the fan so often is because I keep thinking I don’t need to go to the doctor. And the reason I keep thinking that is because I HATE going, not because I genuinely think I don’t need to go.

There are many and varied reasons why I try to avoid doctors, but this is still no excuse for putting my children through it, just because I can be a stubborn cuss. So my Spring resolution is that I will attend medical appointments when I need to rather than wait so long I have to be shipped in as an emergency. I will do this. Honestly…no, honestly I will.

Where did my spoons go?

I had a few spoons and now I don’t seem to be able to find them. Perhaps they are under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.

If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.

I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.

My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually.  It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.

I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.

Since the meds adjustment (candesarten) my blood pressure is under better control.  My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.

The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well

I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.

Bloods taken to check for renal and heart failure.  I intend to ask for ANAs to be done soon.

Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.

It’s okay to be angry and frustrated.

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.

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

The Lucy Pevensie effect. ME patients are not lying.

Lucy 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?

A 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

Humility verses indispensability.

Pride is an ugly sin and is at the root of all sins from the moment Satan said “Non serviam” that is “I will not serve,” pride has been causing bad things in God’s good creation.

Now back in the good ol’days of the Church, before life got soft sometime in the fourth or fifth century, there were no confessional boxes with nice anonymous grills. Oh no, none of that. People confessed their sins before the priest and anyone else who happened to be there. There was often some pretty public penances given as well, especially for public sins. Even kings were told to wear sackcloth and ashes and walk a pilgrimage or two.

If you’ve read Sigrid Undset’s Kristin Lavransdatter (a wonderful trilogy which I highly recommend) you will have seen that Kristin walks a very public pilgrimage in penance for her sin against God and her father. (See how careful I am not to put a spoiler in for those of you who haven’t read it yet )

So I will make a confession here. I have caught myself with a very subtle type of pride and its about being indispensable. My terrible fear of not being useful. God is curing me of the disease of indispensability by having me be really ill. So, good things do come from being ill.

I noticed this pride as Christmas came and I just hadn’t done all the things that I usually do in preparing, cooking, wrapping, getting good presents for people. I like Christmas to be just so, and very special so in the past I’ve spent hours, staying up half the night wrapping, arranging and God knows what else.  It all sounds very generous and kind doesn’t it? But in fact I got a lot out of it. People saying how wonderful I was at all this.

So this year has come as a hard lesson. I can’t do it all. In fact a lot simply hasn’t happened. Christmas cards didn’t happen until the last minute and then only some cards. I didn’t cook enough so there are people without the usual chocolates, chutney’s cakes and sauces. Iona has made a lot of really lovely things, but usually we did it together so a lot could be done quickly.

Wrapping presents defeated me in the end and I just had to cave and go to bed (pulse hit the high 130s as I tried to get the washing done as well). Iona and Josh stayed up and finished the work.

Alex and Anna have been over to help with the final preps and making the Christmas dinner. There are other people who can take up the slack in the rope. I am grateful, but also it upset me. See? It wasn’t just about getting it done – it was about me getting it all done. I have to be useful.

I wanted to be doing it all. I wanted to be the queen of Christmas, making it lovely for everyone and basking in pride. Oh dear me. Now that I can’t I am learning a new humility.

I suspect this particular form of pride is mostly a woman’s problem.  Many of the saints were hidden little people who spent a lot of time being very ill. I think I need to remember that next time I am getting frustrated over what I can’t do.

I came across a fellow ME patient a couple of days ago who said she was lucky in that her family took care of her and made sure she could both cope with and enjoy Christmas. They accept she is very ill and don’t try and force her to perform. A little ruefully she said she wished she could offer something in return. Looking at her, I thought, well you are offering something. You are offering your family the opportunity to take care of you. All those people at the last judgement standing on Christ’s right hand had been feeding the hungry, giving drink to the thirsty caring for and visiting the sick and those in prison and so on. If there were no sick, housebound, imprisoned, hungry thirsty and naked people- how could they have done all that?

DysautonomiaPrison.com
Tidbits

I think when it comes to us sickies and cripples when we stand (before by then we will be able to!) before God, He won’t ask us so much about all the stuff we couldn’t do, He will say, “Did you accept the people I sent to help you? Were you kind and polite and patient with them?” And of course, “All those people who wouldn’t help, left you to struggle and made life even more difficult; did you forgive them?”

So, fellow mothers out there watch for this sin of pride. Don’t learn with the holy 2×4 as I have done this Christmas. Learn from me. I like the saying that any fool can learn by his own mistakes; the wise man learn’s from other people’s.

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.

Then 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

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.

Anyway, 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.

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. 

Trusting the children to get on with it – even when I can’t.

I have the flu. It has floored me and all my careful end of term planning to help me plan the beginning of next term has just hit the wall. This is where I get a bit frustrated. So, I am trying to re-adjust the planning and get the children working with me feeling non-functional.

After the problems over the summer I thought I should plan ahead for ‘eventualities’ but I think I may have planned myself into a corner. I am slightly more functional today so I’m going to get them working and hope we can adjust the plans as we go.

Yesterday the children just did reading. That’s still learning, so I’m not worried. I think the key to keeping the whole thing moving along is to have the children in the habit of learning no matter what’s going on. I am trying to write out plans so the children can get on, and if someone else needs to step in with them, they will see what is happening too.

I don’t know any other chronically ill home educators at the moment, so I really am making it up as I go along. Thankfully I don’t feel pressured to “Perform” from anywhere but myself at this point.  The only person getting bored and irritated with chronic debilitating illness is me.  I’ve been reading the wonderful blog Living with Bob on and off  and I noticed, that like so very many other FMS/ME/Cfs/POTS/dysautonomic folks she has lost friends and family over how sick she is.  (scroll down to sorting wheat from the chaff). I think the fact that many/most of us have seen friends and family vanish (run screaming) into the sunset, we learn to be more self-reliant.

If you look at this article and comments that says a lot of us are labelled as slothful  you will see heartrending statements of people left destitute when too ill to earn money. These are people who have families comfortably off.

Frankly, after ten years, I really couldn’t care less what people think of me. God is my judge; and thankfully a merciful one.  I am very, very blessed to have friends that have been sensible about how sick I am. and I have always had exactly what I needed to get through each day – even in a full on crash.

I do think us sickies need to be cautious when it comes to “wheat and chaff” that we don’t turn into the very chaff we are blowing off. Just about all people who have vanished from my life or are at more than arms length are those who want everyone to be looking at them. It’s all about Me/myself.I people. Well, the danger is we start having the same attitude because we are ill. Having children is a great balancer. It’s about them and their needs and that helps keep the “ME” stuff at bay.

Wake up! We shouldn’t need awareness campaigns!

Oh no! Not another awareness week! Yup. It’s Mental Health Awareness Week this week. It just so happens that it coincides with the anniversary of a dear friend who died when she was refused hospital admission, even though she was desperately ill with depression.

Why do we keep having awareness campaigns? Why are they all the same? They are all the same, you see. All the posters say something along the lines of “People with this disease are not to blame for being sick.” and “Stop treating us badly just because we are sick!” and then there’s the “stop walking all over is as though we don’t exist” messages.

Most posters covering illnesses like mental illnesses and some physical illnesses like Lupus, Lyme, Graves, the dysautonomic illnesses, early stages of MS and of course ME /cfs are called INVISIBLE. I contend that they are not invisible and I don’t just mean those of us using wheelchairs, crutches or having tremors, myoclonic, or other visible symptoms. I mean no one who is seriously ill looks like they are perfectly fine. The “But you look ok” message that so many complain of receiving is a reflection on the speaker, not the sick person. It’s a let-me-off-the-hook of actually caring response.

Why does modern Western culture seem to treat disease and sick people so weirdly? The media has two stereotypes; “the brave cripple” and “the benefit scrounging lay about”.  Despite the well known fact that the media can’t be trusted to tell the truth about anything, people seem to have absorbed this and then sick people get sandwiched in the middle.

Case in point: Let’s call her Jen. She is very ill with a chronic disease. She tries to get on with her life and yes that often takes enormous courage. But there are times when her courage fails and all she wants to do is sit in a corner and cry. This is part of any chronic illness and most acute ones too. It’s normal life.

Meanwhile Jen is stuck between two sets of people. The ones who catastrophise her illness so that she is forced to either reassure, or simply hide the truth – not easy due to the way she is ill – and then on the other side there are the ones who simply don’t get how sick she is and expect her to perform. Worse still one relative feels it’s his duty to reassure the others by making out she isn’t that sick – so she is set up to “perform” for all.

This isn’t a one off story. So. Let”s try a build a world where people can be truthful, encouraged and cared for; a world where there are NO INVISIBLE ILLNESSES.