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.

[clouty]

Sorry not to address any previous posts - I took too long writing mine . I get the feeling the Beeb have gone beyond the pale this time. Dr. Shepherd (of the ME Association) did pretty well though.

[WhollyGhost]

"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."

Much sympathy for your DS, but do you honestly think that people with mental health problems are affected at convenient times, or that it is something they want? Because that is what your post implies.


Someone close to me has ME. He has all the signs of depression. And is really angry, outraged whenever a medical professional, friend or family member suggests that. As Swallowedafly put so well above, with other debilitating conditions, comorbid mental health problems are hardly unusual. It concerns me that within the ME community, there is such an extreme aversion to any kind of psychoactive medication. And often such nasty stigmatising of mental health problems.


I've read a lot around ME, and I would be amazed if it is ever found to be just one thing. It is a collection of very real symptoms with unknown cause. I am sure that in some cases the cause is somatic (which does not mean it is any less serious or debilitating) and in many cases there will be a physiological root cause.

[WhollyGhost]

By example - a friend has cancer, she is also having CBT to help her cope with the pain and exhaustion of her illness. I am sure that many with ME might also benefit from that.

[CogitoErgoSometimes]

I didn't say it was a 'purely psychosomatic condition'. And it probably was blast-induced, hence the name - even though not everyone subjected to the same conditions emerged with the same outcome. But if those sufferers could be successfully treated with a combination of psychological therapies and pharmaceutical intervention, why would it be such a stretch to imagine ME sufferers might benefit in a similar way? And why should a person looking at the psychological aspect be bullied into giving up?

[ThisIsANiceCage]

Completely agreed, it's unlikely to be one thing.

Unfortunately, research in the UK at the moment seems intent on sweeping more conditions under the M.E. label, rather than the other way around.

[ThisIsANiceCage]

The cancer analogy is apt.

If your friend were given only CBT to treat her cancer, how would you feel about that?

[ThisIsANiceCage]

CogitoErgoSometimes said "The psychosomatic condition known as 'Shell-shock' in WWI".

[ThisIsANiceCage]

And the problem is not, as has already been said, that there is one person researching psychological aspects of M.E.

It is that the psych research has pushed out other research.

[seeker]

Let's not forget the undeniable fact that psychological illness carry a stigma that physical illnesses don't. The prejudice and discrimination against people with mental health issues is breathtaking. So people are outraged and offended at the suggestion that their very real symptoms could possibly be psychological in origin- because a " real" physical illness is socially acceptable a psychological one isn't.

[ThisIsANiceCage]

I HAVE HAD A PSYCHIATRIC ILLNESS.

I have declared it to existing and potential employers, to several GP surgeries (moved house) and have volunteered for several academic studies into psychiatric illness.

I DO NOT THINK M.E. IS A PSYCHIATRIC ILLNESS.

Stigma plays no part in this assessment.

[ThisIsANiceCage]

seeker has, with the best will in the world, illustrated the source of some of the frustration.

It's impossible to have a rational discussion about or investigation of M.E., because as soon as sufferers challenge any part of the psych model, they are accused of being mental illness deniers who "would say that, wouldn't they."

This does make it rather hard to do any research, because all metrics of M.E. are (currently) patient-reported symptoms. The same patients who are presumed to be in denial and whose reporting cannot be relied on.

[seeker]

I don't think I did do that, did I? What I did say was that some people with ME are "deniers". For example, there was a woman on the Today programme who "just knew" that her son's symptoms were viral or bacterial in origin and refused to even acknowledge the possibility of a psychological component. And one of the reasons that people fall into this camp is that psychological illnesses are not socially acceptable and physical illnesses are. People are offended by the implication that they may have a mental illness.

[PeppaIsBack]

My undertanding is that ME sufferers are actullay people who are high achievers and push themselves too hard.

I can't not think about the story of a young boy (told to me by his dad).
This child had crippilng ME for years (since he was about 8yo).
Doctors though it was 'in his head' and couldn't possibly be so tired.
They proposed to make him do some exercise in the pool. Here goes the physio. And ... they just drop the child in the pool wo holding him or anything The idea was that, as it was 'just' in his mind, survival instinct would kick in and he would swim.
He didn't and sunk... (Of course they did pick him up and he was unharmed as such but ... could you imagine doing that to a child!?!)

In the process they also had issues with SS as the child was homeschooled (could not possibly go to school) so the child was 'obviously' at risk.

This is why I have a major problem with saying that ME is MH problem. Too many prejudices associated with it, both for the sufferer - what sort of acre are they going to recieve- and for the position of the sufferer in the society -prejudices against MH problems-

And anyway I though that associating ME with MH was the 'theory' in the 1990 but that we ahd move on from that to an 'organic' cause. Why are we going back to that??

[CogitoErgoSometimes]

That's not how medicine works. The 'organic' and the 'psychiatric' are not mutually exclusive. There has been no physical cause found so far and no mental cause either. But the brain is as organic as muscles and other tissues. If the brain is damaged or malfunctioning then it can affect the rest of the body. So it would be ridiculous to ignore the mental and focus solely on the physical.

[ThisIsANiceCage]

And ridiculous to ignore the physical and focus solely on the mental.

[clouty]

whollyghost you don't know the difference between the CBT offered to other illness groups, to help them cope with having a serious disease, and that offered to ME patients. This is how the PACE document (much beloved by Wessely and White) describes what we are given

"CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant?s symptoms and disability."

I am sure your friend is offered treatments to (hopefully) cure or improve their cancer, as well as the CBT. We are not.

[CogitoErgoSometimes]

Exactly Thisisanicecage. All angles must be studied. And, to bring it back to the original issue, it is completely wrong, for a person working on one branch of finding a cure for this illness to be bullied, threatened and singled out for abuse. All research is valid when everyone's still so much in the dark.

[PeppaIsBack]

CogitoErgoSometimes I would love that to be the reality but I haven't found it is the case so far. Havent' seen a microbiologist working with a psychologist so far (See possible cause linked with a virus and the 'all in the mind' theory).
That is coming from the basis of Western medecine. It is a cartesian theory which assume that if you can break everything down to tiny pices and you know the pieces than you will now the whole. (Unfortunatly, as you say, that's not how it's working.) So each area tend to be quite self contained.

[CogitoErgoSometimes]

So they work independently at the moment and maybe they need to work more cooperatively. It's still no reason for one man to be terrorised, reported to the GMC and on the receiving end of such hostility. He's just trying to do a job. We're supposed to live in a civilised and free society.

[clouty]

I'd like to see some evidence of the purported 'death threats' to Crawley and Wessely. We should be asking these questions publicly about the claims:

1. How many 'death threats', and how many 'threats to personal safety', has Wessely received?
   

1. Did he report these WHEN IT/THEY OCCURRED, to the police?
   

1. If yes, what crime numbers were assigned to his complaints? (You have to have numbers assigned to criminal complaints. You get victim support letters as well).
   

1. Did the police investigate? What were the outcomes of those investigations?
   

1. Has anybody giving, specifically, 'death' threats or 'threats to personal safety' been identified, and/or convicted?
   

All we have so far is the word of people who have had all the research money and control over what GP's are allowed to do for us.

[mycatsaysach]

just marking my place for later

[CFSKate]

Ormirian - the BBC link has some inaccuracies. It says,

"Hostility towards a psychiatric explanation for Chronic Fatigue Syndrome reached a peak in 2009 when research published in the journal Science appeared to show a link to the XMRV retrovirus. But a series of follow-up studies failed to replicate the finding, unleashing another torrent of abuse.."

Actually, the studies that failed to find XMRV, did not use the same methods as the original paper. And the article completely fails to mention that some other follow-up studies DID find evidence of gamma retroviruses in CFS patients. It makes it sound as if no-one else could find this virus in CFS patients, which is not the case.

[Thumbwitch]

I have a friend who had ME in her 2nd year at University. It followed a bout of labyrinthitis, a fairly common precursor to post-viral syndrome, often called ME. She was diagnosed with ME but only after repeat visits to the doctors, who mostly told her to go away and stop being so silly, it was all in her head. She was a very lucky person - she recovered after a year (but has had ongoing other health problems since and now has type II diabetes as well as numerous other issues).

She was a high-flier; still is. But she was sleeping 20 hours a day, could only get to college one day a week and had to spend the rest recovering from the effort. She kept going - no malingering there - but she was very angry to be told it was all in her head and would still be very angry to be told now that there was no underlying physical cause. Just because it hasn't been found yet doesn't mean it doesn't exist - and more effort should be put into finding it rather than dismissing it as "all in your head", which IS, effectively, what labelling it as a mental health condition does.