ME. and ME

Fergus Pickering

I have never suffered from ME and I don't know anybody who has it. Lucky me. I have not the least doubt that it exists and I never did from the first time I heard about it. Doctors, and not only doctors, who are only people with a particular training, do sometimes tend to say that what the do not understand does not exist. This has obvious parellels with religious experience, which I have never had. But that does not stop me from knowing that it does exist.

There is another example of this sort of thing, not as serious. That is Dyslexia, which my daughter suffered from and still suffers from, though in a much reduced degree. It comes down to bad spelling now. Actually she was diagnosed with dyspraxia, but it came down to the same thing plus an inability to hit a ball with accuracy which, she being a girl, didn't matter at all. Curiously enough, the chap who diagnosed her, also diagnosed me, or at least the me of my youth. Oddly, it didn't affect my reading and writing.

The point I am making at, probably, far too much length, is the propensity of any establishment to ignore what it doesn't understand, though, in the case of dyslexia at least, the tools for understanding are all there. If I may I will mention the vilified Dr Wakefield who found something amiss in children wh had had the MMR jab. The establishment does not want anything amiss with the MMR jab. Therefore Dr Wakefield is a villain. But of course he is not. I am prepared to bet thta in twenty years it will be admitted he is right. I is already admitted in the United States where he now is.

Your specialoist sounds like a wise man. Wisdom is quite different from training - indeed there is no training known that produces it.

Oh, and don't any of you touch those bloody statins. It's all a plot.

SUSAN HILL

Agree about statins - they hand them out like sweeties, even suggesting fit healthy young people should be on them.
Left handedness has a lot to do with dyspraxia. My husband and elder daughter both are - can't hit or catch a ball,have no spacial awareness, daughter could never knit or sew. Younger daughter and I both right handed.. good ball sense, good spacial awareness, knitting and sewing fine even if not enjoyed. Brains differently wired.

Greg Crowhurst

I care full-time for my wife who has suffered from severe ME for the last 16 years. That means never a single moment in all that time free of throbbing, screaming pain, a host of neurological symptoms ; intense, unfathomable suffering.

That means 16 years of a depth of illness comparable to someone in the last stages of terminal cancer or dying of AIDS.

16 years of utter negelct, no treatment, just abuse and disbelief. Still the government only funds psychiatric behaviour change interventions, no physical research.

ME is an illness firmly in the hands of the Medical Insurance Lobby, who back in the mid-80's coined the made-up term "CFS", attached it to ME and under a small school of UK psychiatrists have gone out of their way to deny the physical reality of a disease 5 times bigger than AIDS, bigger than Multiple Sclerosis and Breast Cancer combined.

One day the depth of the ME medical scandal will be revealed, especially with 5000 published medical papers and recent cutting-edge research into the XMRV retro-virus, dispelling once and for all the myth that ME is a psychiatric condition.

How many more thousands of people will be infected ? ME is both an epidemic and a pandemic disease.

How many more lifes will be lost to this awful, nightmarish ilness ? ME can and does kill.

It destroys lives.

My wife still lies here.

Everyday since 1993.

Jeremy

"I ached all over and I felt ‘weird’."

I always feel like that. I think it's called "The Human Condition".

"I also felt completely exhausted and my head did not ache so much as that my brain itself felt as if it were full of boiled socks."

My brain is always full of boiled socks. It's the only thing it's any good for, and it does 'em so nicely...

"I also had occasional double vision, and from time to time I felt dissociated from everything, as if I were walking round outside myself."

This comes from reading American novels.

"I slept for England..."

Huzzah! Can I join that team?

As I grow older, what annoys me is that I find that if I stay up late because I am engaged upon some creative activity, and then get up early the next morning (for work, let us say) the glands in my throat swell up. Most uncomfortable. It's as though my body is sending me a warning. And that annoys me....it annoys me that I cannot both stay up late and get up early, as I used to be able to do...

SUSAN HILL

Read the post above you and do not mock what you do not truly know. Combination of all those symptons ruined my life for 3 years. I was between 24 and 27 not an oldie as I am now. And I was mild by comparison with many.

Amanda in America

To Susan Hill:

What an awful thing to go through. Poor you.

Thanks for sharing.

Fergus Pickering

Re dyspraxia. I am right-handed, so is my daughter. Perhaps it was forced on us. There is some little evidence that may have been so with my daughter. As for me, that's long forgotten. The odd thing is that with me the whole thing more or less disappeared at puberty. I played cricket and all racket games. I wasn't great but I was OK, could beat some people. Mind you, my wife says I remain very clumsy. But then wives tend to say things like that, don't they? And my daughter, who couldn't read until she was nine, actually reads like anything, much more than my other daughter who taught herself to read when she was four.

Wily Trout

I have known two people who had ME - self-diagnosed. Both thankfully have recovered. Neither had any help from the medical profession. In the case of the younger of the two, a pre-teenaged girl, the local hospital tried to have her mother diagnosed with Munchausen's Syndrome by Proxy. It must have been terrifying for the mother, dealing with a horribly ill little girl who was suffering terribly and at the same time having the medical profession labelling you with an equally obscure malfunction and of course threatening to take the child away and put her in care. The mother was an assertive businesswoman. One can only guess what would happened if she had been less able to take care of herself. It always struck me as strange, the specialist saying There's No Such Thing As ME - but You've Got Munchausen's Syndrome By Proxy....

hadrian

I have two close. personal acquaintances who have had the dubious 'advantage' of knowing first hand what suffeing M.E. is like. My old boss was hard-working, dedicated to his pupils, a bluff, larger-than-life fellow who suddenly went down with this. Initially we all assumed it was a passing viral thing but as the weeks slipped by it became increasingly clear this was something much more intractable and debilitating. One of the more vexing aspects was indeed the mild scepticism some felt about it. It made R. feel even more awful that he knew people suspected him of being a malingerer- the very last person you'd have had the right to accuse of being work-shy. Happily R. took the right decision to get a complete change of scene and moved to a new, less demanding post and though still a shadow of his former energetic self and physically depleted, he has at least regained some stamina. Not so my other friend who's suffered this horrible thing since her early twenties and has to be nursed night and day by her aged mother. Her collapse from bright, bubbly twenty something to trembling wreck has always been a sad, sad thing for her friends and family. To endure it for over three decades and have your life drained from you seems especially cruel.
I cannot, however, see how 'assissted suicides' and euthenasia are at all permisible in a civilised society. The door WILL be open to all sorts of invidious, nasty pressure on vulnerable individuals to agree to death. It is an awful prospect.

wrinkled weasel

I was moved by this contribution and some of the comments of those who have suffered with ME.

How cruel of those who do not understand to disbelieve and mock? How cruel and how sociopathic. However, I am not sure there is such a thing as ME. It seems impossible to cram all those real symptoms under a bland portmanteau, whose letters are a sort of ironic, self-deprecating acronym - even the ME website makes it clear that no two cases are the same. There is no pill. There is no obvious, easily treatable malady.

Part of the problem is that Doctors are trained not to equivocate. They are also resistant to advice or contradiction (try asking for a drug you know that works for you, and you get short shrift). So, if they cannot nail the problem in a nice, easy to remember diagnosis, you get relegated, behind all the ones the NHS goes hell for leather to diagnose.

I hope there is hope for people like yourself and your commenter, Greg. Greg - We laugh at the South Africans for recommending vegetable eating to combat AIDS but, it is not that long ago that doctors advised a change of lifestyle and diet for stomach ulcers, which then turned out to be a bacterium.

They are not always as clever as they think they are.

Tom

Where exactly in Coventry? Having been made vulnerable by the virus something was hitting you. It might have been within the flat, but then in 1968 in many parts of Coventry there was stuff going in the air that wasn't good at all.

SUSAN HILL

Tom. Interesting. I lived to the north and there was often an unexplained appalling smell that drifted over the area, weird chemical smell that made everyone shut their windows. No one knew what it was but assumed it was some factory emission. The symptoms are the same as those many farmers suffered from when using the old - now banned - sheep dip. Also some of the old gloss paints had a similar effect in decorators. Those have now gone. I wonder if whatever the smell was has too.
Assisted suicide is a whole other question. Interestingly, those cheering on Terry Pratchett last night may not have known just this one effect of its being legalised - setting aside any moral arguments. In Holland, where it is indeed legal, most hospices have now closed. I think there are only 2 left in the entire country. There is no effective palliative care and many doctors will not give adequate pain relief because there is this nice friendly 'mercy-killing' alternative. A doctor who previously supported legalisation of assisted suicide has changed her mind, though too late, because she, like many in the medical profession, did not foresee this dreadful consequence. Now when our governments are cash strapped will they put in their share of hospice funding if they can encourage assisted suicide instead ? No. Some pieces will be picked up by charities and churches but nowhere near enough. Palliative care is expensive. It is also humane. The slippery slope will be a fast one, as Holland has discovered but there will be no going back. You can slow down a ratchet but you cannot reverse it.
But to revert to ME, it is debilitating and unpleasant but even doctors who fully accept it and its symptoms wonder how it can also be acutely painful for a few sufferers. Aches, weariness, general malaise yes - it is the acute pain that really puzzles them.
Those wanting to read an excellent book about it by a man who was the least likely of many to contract it, try A YEAR LOST AND FOUND by Michael Mayne, one time Dean of Westminster.

Tom

Susan - Will see if anyone in Coventry remembers the source of the smell. In the meantime whilst we have checked some air pollution, in some respects it is getting worse. There are a lot of people being affected and often with marked fatique etc. Look at vivienpomfrey dot co dot uk and her new blog freshairfiends dot wordpress dot com. Research by Martin Pall at Washington State University USA (NOT D.C.!)published in Autumn in Enironmental Illness Resouce is another item. ME may well be multi factor in cause and the causes may be multi effect as well. How the body reacts to chemicals is highly variable and often difficult to determine. If a person is being "whacked" then a very systematic of when where what etc is needed to begin to work out the options

EC

Wily Trout, February 1st, 2010 3:15pm,

A nightmare scenario. A shining example of medical ignorance and dishonesty, combined with a desire to tick a box, any box and offload a problem case to the fascist Social Squad.

Susan Hill,

Another personal anecdote I'm afraid. I've known two families, friends, who both had a daughter with ME. It made life extremely difficult for them during their teens and hampered their education. They were both clever and intelligent girls and both recovered enough to eventually go on to university, one to Oxbridge.

At the age of 23, my daughter was diagnosed with MS last year. When her symptoms first began she was initially dismissed as a hysterical female, but eventually there was no quibble about the diagnosis. However, the support, help and advice that she has received from the medical profession following this devastating diagnosis has been virtually on existant. The same goes for the university where she is a post grad student and where any "support" has been limited to a cynical box-ticking exercise designed, one imagines, to protect themselves.

It seems that there is very little professional or public understanding, or even acknowledgment, of either condition.

EC

... it should have read "non-existant"

hadrian

Thank you, Susan, for that rather chilling insight into the situation that ha developed in the Netherlands as a result of Assisted Suicide. There is little doubt in my mind it would lead on to an insidious pressure on vulnerable, sick individuals to regard 'administered death' as the expected, 'right' thing to do. What an opportunity for all those desperate for their relatives to die. The reason I raised this allied topic is that one of the girls in the recent cases was an M.E. sufferer.

SUSAN HILL

Indeed.. this is something the people cheering on Terry Pratchett with his nice rosy view do not realise. And what about nice old people who are not really ill but don`t want to 'be a burden'? And Pratchett's idea of death panels deciding who can live and die is Nazi in its conception because that is only what they did. I leave aside all moral arguments - I do not believe we have the right to take life, our own or that of others but there are other arguments which ought to exercise the minds of those who do believe we have that right. The thin end of the wedge argument was never more relevant. Incidentally, in today's Daily Mail the UK's top cancer specialist Karl Sikora writes a very pertinent article - and says that in his 30 years as a medic he has NEVER ONCE had a patient ask him to kill them. (Let us not have any euphemisms.)

Tom K

A recent paper (Pheby and Saffron, 2009) investigated why some people end up with severe ME but most do not.

It was quite comprehensive. These are its conclusions:
---------------
Conclusion

Family history was a risk factor for severe
ME/CFS. The strong association with having a
mother with ME/CFS, but lack of association
with having a father with the condition, is
consistent with ME/CFS being associated with
disturbed mitochondrial function. Being female was also a risk factor for severe disease. Early management of ME/CFS appeared also to be a major determinant of severity, with all but one of the variables in the final logistic regression model pertaining to the management of the condition in its early stages.

"Personality type did not appear to constitute a risk factor for severe disease. There was an inverse association between neuroticism and severity, but none overall between conscientiousness and severity. Mean scores for neuroticism were consistently higher among mildly ill subjects than among the severely ill, which may indicate either that severely ill people may develop a degree of stoicism that affects their responses to personality questionnaires, or that the mild category included some people whose illnesses were not ME/CFS at all, but other fatiguing conditions which may have been related to personality. There was no association overall of conscientiousness with severity, but, among the sub-domains of conscientiousness, self-efficacy and selfdiscipline were more marked among the
severe cases, which may indicate that only the most motivated of severely ill people
persevered to the end of the questionnaire.

"The examination of possible associations with other pre-illness exposures and with
biomedical factors was inconclusive, and more research is clearly needed in this area."

---------
This probably doesn't explain in detail what "early management" meant. They found, for example, that people who are now severe took longer to get diagnosed. They were more likely to do physiotherapy before being diagnosed and immediately after being diagnosed.

This family in the early days did try to get Lynn to walk up and down the road following advice they got - I have seen such advice cause problems as it did in my case, I believe.

BrianSJ

http://ecam.oxfordjournals.org/cgi/content/full/7/1/3 may help some.
I am not sure it goes away, though I dearly wish mine would. Intellectually I don't believe in homeopathy but am glad I respond well to it.

Fergus Pickering

I must say, Susan, that your posts do tell me stuff I didn't know and that I am glad to know. Thank you. I shall read another of your novels. I've read the one about the boys in school. I liked it. What's the next one I should read. Isn't there a ghost story.

daniel maris

Normally one wouldn't wish to comment on other people's medical history but -

1. Regarding Alzheimer's Terry Pratchett's disease doesn't seem to affect his ability to engage in lucid and complex communication at all. Where on earth did he get his diagnosis from.

2. I don't think anyone knows the truth about ME. However, I am sure that following a difficult viral illness one could easily get into a downward spiral, especially if it became linked to an eating disorder.

3. I don't think we know enough about environmental factors. I felt dreadfully ill for months after my wife put down some anti-cat flea stuff all over our house.