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.

"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."

Really? So my depression was 'all in my head' was it? IE not important or debilitating in any way

That is what occurred to me when I first heard the piece on the radio. That so many, too many, people dismiss MH as not 'real' which is why some ME sufferers don't want to be associated with it. I was hoping to find that wasn't the case with this thread. Mostly I have.

Of course mental illness stigma exists, and may even motivate some people who aren't sold on the "M.E. is psychosomatic" story - but it's far from the only thing that's going on.

That mother on the radio may simply be reacting to years of HCPs insisting her son's illness is malingering or psychosomatic (because plenty of HCPs do say this). She may have listened carefully and open-mindedly to what HCPs are saying and thought, "What they are describing does not match what we are seeing. And we see DS 24 hours a day 7 days a week in a variety of circumstances, not 10 mins sat down in an office."

She's wrong to claim that therefore she knows M.E. is caused by a virus - because no one knows. But it may well be that her observations of her son's illness match more closely to some viral illness she's seen than to the descriptions the HCPs are giving.

But no one can ever learn from this, if researchers label her reaction "mental illness denial."

X-post with Ormirian.

Orm, you are twisting what I said.
I am not belittling your or anyone else's mental health condition. Nor am I suggesting that it is "all in your head" either. Of course it's "real"! However, some mental health conditions don't particularly have physical manifestations as such, despite it being a biochemical misfire, if you like - it is the brain that creates much of the problem in a mental (mind) illness.

Please don't take offence at that which was not intended to offend.

I wasn't taking offence thumbwitch, honest!

But I think that this 'all in the mind' thing is so pervasive it needs to be tackled. And such a weird and unhealthy dichotomy between what goes on in the skull and what goes on elsewhere.

Orm, I agree entirely and I apologise if it appeared that I didn't.

I believe that there was some effort made to link fibromyalgia (ok, not ME but kind of associated) to parvovirus B19 - haven't caught up for a while with how that went - is that still being researched, I wonder?

And therein lies the misunderstanding.

Just because something is "all in your head" does not mean it's not real. Depression is real. Bi polar is real. OCD is real. "phantom pain" is real. If it turns out that ME is a mental health issue it will still be real.

I've managed my depression over the years with therapy and anti depressants. Mental illness has very real physical symptoms. But it is treatable. There are things that can help lessen the symptons and some issues can be dealt with through cognitive therapy.

The problem with ME is that doctors aren't saying it's a mental illness and we will treat it with x, y and z. They are (I accept not all of them) saying it's psychosomatic, here, take some antidepressants/anti-anxiety meds. They have no idea what the causes are or how to treat it effectively, so regardless of what causes it, you're stuck with it.

I don't think those reacting with anger to the 'mental health' association are reacting to the stigma that is associated with mental health issues. I think they're pissed off and frustrated that they are being told that the pain/exhaustion is psychosomatic without any evidence of that.

It reminds me of the research on stomach ulcers and the finding that they were caused by bacteria (I think). For decades other researchers had not bothered to look for any bacterial cause because the accepted cause was to do with stress and stomach acid.

Link to article about stomach ulcer researchers. They won a Nobel. They were praised for 'challenging the prevailing dogma' - they had to fight hard because even with their research, other medical professionals were unwilling to believe that the accepted cause was wrong.

ELNP - yes, the bacteria associated with stomach ulcers is Helicobacter pylori. They used to do a fairly simple test for it but that was withdrawn so it's a bit harder to get tested now, but still possible. Some GPs have to be pushed really hard to get them to order the test though.

Quote from link about gastric ulcer researchers:

*Lord May of Oxford, President of the Royal Society, said: "The work by Barry Marshall and Robin Warren produced one of the most radical and important changes in the last 50 years in the perception of a medical condition.

"Their results led to the recognition that gastric disorders are infectious diseases, and overturned the previous view that they were physiological illnesses." *

A girl I went to school with suffered terribly with it and the only 'investigation' offered by the medical profession was the suggestion that she go into a psychiatric hospital, on an adult ward, for 'assessment'.

I'm not suggesting that it's acceptable to harass or threaten researchers BTW.

DH has long term mental health problems (from the age of 7), he also has ME.
ME didn't rear it's ugly head until DH had contracted shingles a few years ago.

He has been offered help for the mental health issues, but none for the ME. None at all.

Although I agree that there may be psychosomatic elements involved, (hell I have back pain, it's definitely affected by my mental state even if it isn't caused by it), but the focus with ME does seem to ignore the physical side of it.

I wasnt trying to suggest mental health problems happen at a time suitable what I (v clumsily) was trying to say that ds is at a time in his life whereby he really did have no stress no problems no worries he wasnt a high achiever he wasnt ill as such he just became 'ground' down by M.E.

His diet is and always has been fab this is a child who eats at least 5 a day with no encouragement he prefers an apple to chocolate and hed eat broccoli forever.

The interesting thing with ds is that he became ill after a bout whereby it was thought he had appendicitus aged about 5 -he didnt but since then he's never had good health blood tests initially and for a long time showed a problem similar to anaemia with very high white cells then he became poorlier still and since tests have shown infection with glandular fever so it would appear he had M.E then contracted GF on top of it .

If he were open to the idea of counselling id willing take him - hell id stand on one leg outside the ikea sale if i thought itd help him.

I have just seen on some other forums that some people think that if the cause is unknown, that means the same thing as nothing can be found. There are plenty of physical abnormalities found in ME/CFS. So please don't think that there are no physiological problems found in ME/CFS.

"I have just seen on some other forums that some people think that if the cause is unknown, that means the same thing as nothing can be found. "

I can believe that :(

nickschick - very interesting that your DS prefers fruit and veg. Please have a look at this search page with specific note of the third link down; and then read this guide - you'll note that both apples and broccoli are high in salicylates. This may never have been mentioned to you before, I don't know - but it might be worth trying a salicylate-reducing diet to see if it helps him.

"I'd like to see some evidence of the purported 'death threats' to Crawley and Wessely"

I think that's low blow. Accusing the researchers of lying.

Not trying to muddy the waters, but does fibromyalgia come in here as well?
painful, debilitating, regarded as 'all in the head'ie we don't have a clue?

One researcher points to it being a thyroid issue in actuality link

I had ME from which I thankfully made an almost full recovery although it took me several years. During that time (from about 17 to 23/4) I was treated for depression at one point - and as my GP said to me, its not surprising that you become depressed when something has such a debilitating effect on your life and you cant have a normal life/hold down a job/go out with friends/ wash your own hair.

So theres a cause/effect thing to think about with it as well.

I know there are a lot of people who are worse than I ever was so good luck to you all. Dont give up - its not always permanent and Im proof of it.

We aren't robots. Our physical and mental health are interwined. For example cancer victims with a postive outlook often live longer than those who give up.

Even if ME has a physical cause, its possible that many ME suffers may develop depression/ anxiety. Prehaps some ME sufferers protest too much.

There are a minority of people who quite enjoy being treated as unwell. My granmother (who did not have ME) was always convinced that she was dying for the last 50 years of her life. I am not saying that all ME sufferers are like this, but one or two might be like my granmother.

Why do some ME sufferers have such a negative attitude to mental illness. Depression, anxiety, self harm, schrophrena, biopolar are all real illnesses. Maybe there is viral component to some common mental illnesses, who knows.

Surely the main thing is to find a treatment for ME. Then people could get on with their lives.

Just to clarify, although ME is treated by using CBT, the CBT is not to treat the CFS t is used to treat the co-morbid anxiety or depression. I think when things get reported in the press this angle gets missed out.

Many HCPs don't believe CFS to be psychological, though frighteningly there are those that do (some of my colleagues). I am a therapist, I treat patients with CFS using CBT, person-centred counselling and pacing. I also have CFS, triggered by 2 recurrent bouts of glandular fever in my teens.

The problem with the psychological angle is that research = money. The psychiatric quarter has fought tooth and nail to maintain that it is a psychological illness. There is actually precious little evidence tha it is psychological in origin except that no one can find the precise physical cause. It is similar to hypothyroidism, adrenal burnout and Gulf War Syndrome though, all of which have some measurable physical attribute.

The XMRV debacle was crushingly disappointing to many suferers. It may also have put paid to more research being done in this area. Pharmacology = big bucks and they will fight to keep the money.

Having experienced depression, chronic pain, long term disorders and CFS, as well as being a therapist, personally I can say that it is unlikely imo to be psychological in origin. My CFS acts exacly like the post-viral syndrome I had after I had glandular fever - perfectly well recognised by doctors. It just never went away.

My dd has a physical condition (Ehlers Danlos syndrome) with a mental health component (it is known to be linked to anxiety and depression). She has been offered mental health-related treatment on two occasions.

On the first, it was because her symptoms were thought to be entirely psychosomatic and the referral to a mental health nurse meant that all other investigations stopped. This meant that vital life style changes were not made, that dd was pushed to make movements and push herself in a way that was detrimental to her body and that she became increasingly confused and stressed because the doctor kept telling her that incidents she described (joints bending the wrong way) simply could not be happening though she knew they were happening. We were frightened because we saw her getting worse and it was clear that mental health treatment was used as a substitute for a thorough investigation/liaising with experts.

The second time, the mental health team knew about the full diagnosis and CBT was offered on the terms of "this treatment will help you to cope psychologically, but you will also do anything else that may be needed to help you cope practically".

The difference in emphasis has meant a complete difference in impact. Now dd feels she can trust her therapist to be dealing with her problem she is beginning to make progress.