Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and cfs, McManimen et al, 2018

https://twitter.com/user/status/1025080522094067713

 

Suggests maybe that some poor folks with ME screwing up their lives, and no bugger believing them, were pretty rational in their suicidal thoughts.
DISCLAIMER! Not suggesting I agree with it! Hang in there people .

 

Absolutely, when I got ill in early-mid 1980s in Scotland, there was no true stigma, yes, there was disbelief amongst some, but the response was mostly bafflement and god this is awful, as most people had not even heard of ME, it was a new illness for many of us. IMO the stigma has been wholly manufactured by Wessely and pals and is a direct result of their arrant nonsense. I wrote a short piece for Guardian’s Comment is Free some years ago:

 

They rightly say they are not claiming ME/CFS per se is all in the mind, but in saying that they are, as usual, being rather deceitful, because the reality of what they are saying - in colloquial parlance - amounts to much the same thing. They are saying that believing you cannot carefully exercise your way back to good physical health, and so recover from ME/CFS, is all in the mind. As they see it ME/CFS is a combination of being deconditioned, together with a mindset that the physical problem is something else and so cannot be recovered from. Any ordinary mortal will interpret that as saying, in effect, it is all in the mind. It's a subtle but important distinction, that the BPS crew forever play on. Poor old Michael Fish pointed out for ages that the major storm that hit the UK in Oct 1987 was technically not a hurricane, so he had been right to tell people not to worry about a hurricane being on the way. Pedantry is not a get out in many cases however.

 

Interesting you should say this. I found this article by Wessely and a student of his in BMJ from 1994 saying it's all the media's fault - Professional and popular views of CFS [pdf]. I guess that's what prompted them to want to try to control the media via the SMC...

 

Also interesting. So is his implication here that the media's projection of ME is the real problem, and does he seek to distance himself from that?

Edit: I missed the subtly hidden link ( ), so may have got this out of context.

 

Wessely says that articles in the press endorse a medical model of CFS and reinforce stigma about psychological illness.

In my view the BPS model is intrinsically stigmatizing and much of the stigma, at least in medical circles, originates there or from similar ideas about psychogenic illness.

Saying things like patients mistake ordinary sensations as signs of serious illness is stigmatizing. The model proposes that the patient is profoundly mistaken and maladapted. I'm guessing that for Wessely, overcoming stigma means being able to say these things about patients without having evidence and not encountering resistance.

 

I'll fix the link so it's more obvious (and also to add the pubmed link which includes further links to commentary).

btw - Just found another one - White's had a go - Views on the nature of CFS

 

And straight in it goes with ...

... despite protestations from the BPS camp (MS recently I think) that much of their research focus has been on CFS rather than ME.

 

Funny isn't it. The opinions we've sampled, that have been so strongly influenced down the years by our distorted beliefs, we now use as 'evidence' that our distorted beliefs must be right.

Science? Or religion?

 

Cosy.

 

Just the usual nonsense, an attempt to ‘disappear’ ME. His intro is so manipulative, suggesting the media prefers ME while science prefers CFS. CFS label did not exist in UK when I was dxd. It is inconvenient for Wessely that there are patients like me, diagnosed long before his involvement - long before ME was in media - I recall no major articles when I was first ill end 1982 - only one in a local newspaper in 1984 in which I was interviewed. The yuppie flu label was later, around 1986 or 87 I think? His version of ME is a long way from my lived experience, he is the exact same menace to pwME now that he was then.

 

You are so right! He did a paper where he said the claims that CFS patients were type A personalities and overachievers were wrong without ever mentioning that it was him and his cronies that were the only ones saying it. His website said that CFS was neurasthenia and that it disappeared for most of the 20th century until the 80s, carefully omitting the epidemics as that did not fit his theories at all.

I remember activists getting frustrated that he kept claiming people with CFS, as he insisted it was called, had bad coping skills without ever asking anyone how they actually coped.

They claimed it was fashionable - not when we became ill. They claimed it was spread by the internet - not when we became ill. They claimed it was caused by total bed rest - never knew anyone who recommended total bed rest.

Every time there was an article or a TV programme about us there would be a letter published from a "sufferer from depression" complaining that anyone saying ME was not a mental illness was attacking them and all the poor mental health patients. I am not so naive now and believe they were all planted to make us out to be the attackers not the victims.

 

I remember David Baddiel (UK "comedian") saying something like this in the press along the lines of "why don't people with CFS just shut up and admit that they have depression". It was in the context of stigma.

 

I don’t to be honest recall the Baddiel comment being as blunt as that, but I do recall some years ago he said sth along lines of CFS sufferers not wanting to admit they were actually suffering from depression. He himself has suffered from depression, and he is not the only celeb with depression beating pwME with this stick. Celebs have a public platform for ill-informed commentary on ME, which is just hugely annoying. This nonsense though is all thanks to Wessely’s rhetoric.

 

I recall years ago mentioning ME to my GP. I didn’t mention then that our dearest family member has it. I knew there was huge stigma. I simply asked what she knew and thought about this illness.

Her response ( my paraphrase); these people can’t cope, they just can’t cope with life

I left the office sick to my stomach.
Now, I have mentioned to her some of the research, and she just remains silent.