ME and 'torrent of abuse'

[Ormirian]

Can anyone explain this to me ?

I was quite shocked at the news story on Today. SIL suffers from ME - it is a dreadful condition and there are times when DB thought he would lose her. But I am still not sure what has caused such rage.

Is it really so dreadful for the condition to be associated with MH ? Having had mild MH issues for a good chuck of my adult life I find it a strange response - to be attacking researchers for looking in a certain direction nto a condition that causes such suffering.

I think it stems from some people feeling that by treatment / research for ME incuding psychological components, instead of solely focussing on searching for a causal virus etc, that ME is not being taken 'seriously' by the scientists / medical professions.
This stems from a popular misconception about the relationship between mind and body. The popular notion is that there is a clear mind/body split and if something for example pain has a psychological or psychiatric origin/component that somehow it is "all in the mind" which is taken to mean that 'it doesn't really exist'.
The reality is that physical symptoms e.g pain (and I'm not referring specifically to ME here) can have psychological components / origins but that does not mean that the pain does not exist - it is still pain and just as painful and 'real' as if it had organic/physical origins. It is classed as 'somatic'. Somatic pain is real, is just as debilitating etc as pain of physical origin. But the cause is ther relationship between the mind - the thoughts, feelings, cognitions and resulting behaviours etc - and the effect on the body.
But because somatic symptoms have been dismissed in the past e.g in the media etc as 'all in the mind' = doesn't really exist, some (a minority by the sound of it) ME campaigners take umbridge against the suggestion of a psychological component to ME.

But really, the pain, exhaution, etc of ME is REAL whatever the origin of it, and scientists / professionals who are offering a psychological perspective are not saying that it is not real, but that there may be psychological components involved as well as organic/viral/physical.

That's my understanding of it anyway...I could be wrong.

Disclaimer - my post above does not represent any beliefs I may have about the causes of ME. I actually feel that I do not know what causes it - nobody does yet, as I understand it - but that it sounds like both psychological factors and organic factors can have a role, with the 'trigger' for ME and the maintaining factors varying from case to case, for example someone may have an organic cause e.g. a virus but psychological elements may come into play a bit down the line.
Certainly it needs loads more research, into possible organic causes, but also into any psychological components that might be involved too.

I hope my posts don't piss anyone off. Certainly ME is an awful, debilitating illness that is REAL whatever the cause.

I think because theres no 'physical' symptoms and all you can use to diagnose it is the patients actual description of pain etc and there is no 'reason'/explanation or cause for it for a long time it was assumed it was a mental health issue,I believe the Lancet actually reported it was no longer perceived as mental health more a neurological complaint so as to detract from the 'label'.

The very real worry of M.E as my own 15 year old ds will tell you,its not that the sufferer wants it indeed it comes at very inconvenient times its more that the body reacts and the symptoms follow.
My own Gp was v sceptical of ds having 'm.e' and since there is no vaccination or pill to remedy it then of course its difficult to treat,the Gp did infer it could be M.H to which we listed huge details of events where ds had 'taken ill' and it really was the last thing he'd want.

Ds is a very confident 'jack the lad' he adores school,hes the life and soul of his peer group he was sporty,not academically gifted just middle of the road,he has a great sense of humour an absolute womaniser just a young boy who loves life.

M.e takes all that away from him to see him lay in bed unable to get to the loo without his Dad carrying him,for him to have to say to me 'mum i ache im 'wonky' i need a bath but i cant do it' means he needs me to bath him cos he physically cant,to watch my ds sit on the bench in his nike trackies watching his friends play football with the ball hes saved up to buy but cant play with......to catch a bus and an elderly man ask him if he needs his seat bcos ds looks poorly when to us this is a 'good day'.

M.e is a bastard of a disease and anyone who disbelieves it should try having it for a week- see how they will change their thoughts then.

^ apologises for the rant .

Nickschick...my heart goes out to your DS. What a dreadfully debilitating and awful illness ME is, particularly for the young. I do hope your DS sees an improvement soon.

Thanks selks. I think you are right about the 'all in the mind' label.

SIL has researched widely into her personal condition.

She beleives it was caused by a poor diet (not that poor really but a Western vegatarian diet - heavy on dairy and wheat and fungal foods) and massive stress at work. The final trigger as such was a savage bout of flu. She has suffered from depression in the past. At one point the candida overgrowth in her entire system was making it impossible for her to eat and drink. It was truly terrifying. She had fought back with some success with a hge change in diet and lifestyle and an array of supplements. But it has taken it's toll and she's still not back to where she was 13 years ago.

Her experience is that it was caused by a whole range of factor - emotional and physical. So, as you said. Strange to be so frightened of the mental health label.

Thanks Selks I just get ranty when its assumed its mental health.
Ds doesnt cope v well with his illness he doesnt accept his limitations so i fear he will always be fighting against it instead of accepting it and living with the constraints.

nicks - I guess it just shows how much ignorance there is about MH and ME both.

Has your son tried any sort of dietary changes and supplements?

I have ME. AFAIK, every penny of govt research funding for ME goes towards mental health research.

I'm angry about that, and here's why.

In 1999, a 26 year old woman called Sophia Mirza got severe ME. Long story short, she was sectioned, she got worse, she died aged 32. After her death, her remains were examined by two neurologists - they found inflammation of the spinal cord (dorsal root ganglionitis), evidence of viral infection. A pity she was not allowed to see a neurologist before she died, but her illness had been deemed psychiatric.

In 2008, a severe ME sufferer (who had also been treated as a psychiatric patient) called Lynn Gilderdale committed suicide aged 31 - again "When her body was examined by the pathologist who specialised in M.E., he discovered 'dorsal root ganglionitis' - infected nerve roots - and nodules of Nageotte, which are liitle tombs of dead cells, in her spinal cord. These would have caused her terrible pain and sensory nerve damage."

Lynn had suffered for 17 years, and no progress was made towards a treatment in that time, because all the research money went to researchers that treated ME as a mental health problem.

I could tell you many more stories like this. The scientists who want to research cases like Sophia and Lynn as a physical illness are starved of funding, while the money instead goes to those who treat it as a mental health problem, e,g, the Simon Wessely school of thought. Patients continue to suffer and die.

I recommend anyone with an interest in ME get themselves the information available from the recent CPD accredited conference held in London this May
www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20Conference%20Report.htm

That is interesting CFS.

Just to add, there is a long thread about ME in General Health here www.mumsnet.com/Talk/general_health/1105040-Could-I-have-mild-ME

That's very interesting, CFSkate. Tragic stories.

If it is the case that research in CFS is just in the mental health field and other organic fields are neglected then imho that's very wrong.

One of the researchers that was mentioned on the news item had been researching into viral causes.

Regardless of any background I think it's appalling that anyone researching the reasons behind a disease should be attacked for simply doing their job. Many physical conditions have psychological aspects. It's well known that depression and stress, for example, reduces the immune system. If I suffered from a condition that was 'incurable' I would rather researchers were looking into every aspect rather than being bullied and threatened down a particular path....

My GP has said out right that M.E. is psychosomatic. No "there might be some additional psychological component" but "it's psychosomatic".

I have never seen an answer to "why do you think that" that doesn't boil down to "because we don't know what it is."

Last week, there was a news story about dementia. Apparently, it's 17% more effective to treat an agitated or aggressive dementia patient with painkillers than with psych drugs. Because NEWSFLASH they are in pain. But having a neurological disease and being unable to communicate easily, they were labelled mentally ill and given powerful anti-psychotics to treat that.

I have had M.E. for 9/10 years. I wouldn't send abuse to those researching it but I get continually frustrated that they are even looking at anything to do with the mind wrt to the illness. It is something physical. I tried to walk my DS to nursery recently as it is only half a mile away. As it is all up hill, I was in total agony that evening and could hardly walk all weekend (it was on a Friday), things like this are not caused by anything that is not a physical condition.

The answer to 'why do you think that?' is surely that they haven't yet located a physical cause. Pscychosomatic doesn't mean 'you're making it up'. Far from it. The psychosomatic condition known as 'Shell-shock' in WWI resulted in some very pronounced physical symptoms. It's not an either/or situation.

I'm also not a great candidate to cast a "mental illness denier". I had an actual psychiatric illness - severe depression - many years ago and you can find me on the MH boards here saying so in depth.

I don't reject the idea of M.E. as psychosomatic because of some fear of psychiatric illness. I reject it because, on the balance of the evidence, I don't think M.E. is psychosomatic.

Non-understood conditions can turn out to be psychosomatic. But they can turn out not to be psychosomatic (multiple sclerosis, for example).

If you don't know what something is, then you don't know that it's psychosomatic.

If you have a problem with that statement, ask yourself why.

It's because you are using the word "psychosomatic" to mean "I don't know." Which is a problem, because "psychosomatic" has actual, medical meanings.

And it's not clear shell-shock is a purely psychosomatic condition. It's entirely possible that many soldiers were suffering, entirely or partially, from blast-induced neurotrauma.

What has changed is not the injury. Or even the symptoms of the injury. It's the medical technology which allows us to "see" the injury. And that profoundly affects doctors' willingness to believe that, uh, there is an injury.

You have ME. You can no longer do the job you love, or have any kind of a social life. You are just too sick. Because of current thinking on ME, you are forcibly hospitalised. You are ridiculed for being ill. You had to crawl to the canteen lo eat. You were left in soiled linen.

Because of the current view of ME, Sophia Mirza and Lynn Gilderdale among others did not survive. This happens. it happened recently on the Isle of Wight. The Tymes Trust have rescued 66 children from this 'treatment' over the last few years. I have online contacts who have suffered thus.

If the psychological causation theory was real, their treatments would work. Yet there are people who have been "treated" using this theory, and are still ill (or dead) 20 or more years later. For more information about what ME really is, see here: a scientific paper written by researchers and doctors with more than 400 years of experience between them.

Biomedical research into ME is starved of funds and researchers are hounded out of the profession. . Where's the evidence for the claims of harrassment of Prof. Wessely and Dr. McClure? vimeo.com/24683179

Dr Wessely and colleagues on ME Patients:
*1994 ME was described by them as merely "a belief" (1);

*1996 they recommended that no investigations should be performed to confirm the diagnosis (2);
*1997 they referred to ME as a "pseudo-disease diagnosis" (3),
*1999 they said about ME patients: "Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service" (4).

Now, ludicrously, Prof. Wessely has said that he feels safer in Afganistan than when dealing with ME patients.

1. "Microbes, Mental Illness, The Media and ME - The Construction of Disease". Simon Wessely; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, 12th May 1994 (transcript and Wessely's own working notes)

1. Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners; Royal Society of Medicine (CR54), October 1996

1. "Chronic Fatigue Syndrome and Occupational Health"; A Mountstephen & M Sharpe; Occupational Medicine 1997:47:4:217-227

1. "ME. What do we know - real physical illness or all in the mind?" Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde (transcript)