How do we stop charities and influencers spreading bio-babble about ME/CFS?'

Clio said:
ICC criteria is the only one that doesn't require q person to have fatigue, which is why I found it the most relatable as other diagnostic criteria do not fit patients like me since all of them focus on fatigue as a mandatory symptom instead of PEM.
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I think it is fair comment that CCC and other more recent criteria have used the term 'fatigue' when it is clear that what peope with ME/CFS experience is not any of the ordinary sorts of fatigue. But CCC does require PEM and I find it hard to understand what PEM is if it is not some sort of feeling dreadful that, being hard to describe, is maybe best referred to when talking to people without ME/CFS as fatigue. If it is impossible to do normal things, that to me comes under 'fatigue' if it isn't actually due to pain or muscle weakness.

And although this may be one saving grace of ICC, since the rest of it is make-believe I am not sure it is a good reason to use it!
 
Jonathan Edwards said:
I don't really buy this idea that CFS covers a whole load of people with vague fatigue who don't deserve to be bothered with. Peter White and Michael Sharpe developed this idea of 'chronic fatigue' that was vague but that wasn't chronic fatigue syndrome, which had been invented earlier pretty much as a name for ME/CFS. The whole business about 'ME being special' seems to me typical of the memes spread by fringe physicians and advocacy groups that just made life difficult for everyone and ended up with doctors not wanting to see anyone with ME/CFS. I think it is time people got over all that and focused on finding out what ME/CFS is. I personally can't be bothered with these interminable distractions.
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I think the real objection to 'CFS' has been that it trivialises the condition, no matter what its definition may be. Tell someone that you have 'chronic fatigue syndrome' and they'll think it a tremendous joke and say, with a big grin, 'Well, I'm tired too!' and have no idea why you don't find it absolutely hilarious and charming. I think this is why BACME like to call what we have 'CFS/ME'. It's a constant, burning insult.

But yes, I completely agree that this isn't a fruitful place to spend our time and it's just an endless distraction from the real work that we have to do.
 
Sasha said:
Tell someone that you have 'chronic fatigue syndrome' and they'll think it a tremendous joke and say, with a big grin, 'Well, I'm tired too!' and have no idea why you don't find it absolutely hilarious and charming.
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Yes but if you tell them you have ME they will stifle their grin and say to themselves "well we've got a right one here", just as you would with someone who believes in crystals.

Wessely said that people with ME just think they have ME, people with CFS have real problems. He took CFS seriously, just got the analysis wrong. For most medics the term CFS recognises that there are people with a syndrome that we do not understand with disabling symptoms that go beyond just being tired all the time. Which is what ME/CFS is. The pity is that service provision has been dominated by the influence of Wessely and Chalder.
 
Utsikt said:
So he defined CFS as a broader group that includes pwME, and said that CFS is real, but the pwME imagine that they are sick?
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Oh no, he said that the two groups were almost entirely exclusive. People with "ME" were just preoccupied with 'having ME' and had nothing wrong with them. People with CFS did have something wrong with them. But then of course the story changed a bit, once his lymphocyte and HLA studies had bombed, and people with CFS had trouble with unhelpful thoughts as well.
 
I think people need to realise that the narrative around CFS is very much part of the advocacy ME spiel that has seeped into every corner. Stories that validate the sense of neglect that people with ME/CFS have are seen as plausible but the real story is as much cock-up as conspiracy. After all, if the symptoms of ME/CFS are so hard to describe to people without ME/CFS, how are those people without ME/CFS supposed to come up with a name that makes sense? Maybe people with ME/CFS should have explained that what they really have is blergo and then doctors could dutifully call it blergo disease. But they never did.;)
 
Jonathan Edwards said:
Oh no, he said that the two groups were almost entirely exclusive. People with "ME" were just preoccupied with 'having ME' and had nothing wrong with them. People with CFS did have something wrong with them. But then of course the story changed a bit, once his lymphocyte and HLA studies had bombed, and people with CFS had trouble with unhelpful thoughts as well.
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But the pwCFS and pwME reported experiencing the same symptoms, and the only difference was if they claimed to have ME or not?
 
Personally, given ME/CFS is a place holder until we have better understanding of the aetiology, I have no problem with charities and organisations using just ME though even this may seem contradictory.

I see arguing about the name without further knowledge unproductive, though obviously discussion of the diagnostic criteria used in research is very important.
 
Utsikt said:
But the pwCFS and pwME reported experiencing the same symptoms, and the only difference was if they claimed to have ME or not?
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Things are more complicated than that. There are quite a large number of people who think they have a particular illness and become conversant with the symptom names and may give a textbook account of having that illness but clearly don't. They probably often end up being referred to psychiatrists. Over the last ten years on the forums we have come across people who claim to have textbook ME/CFS but miraculously get better with implausible treatments. Dr Garner comes to mind. Others I will not mention. People who just think they have ankylosing spondylitis and people who do have it are quite easy to separate. For ME/CFS it may be trickier but it would be surprising if both sorts of people did not exist, because it is usual for most chronic diseases. Wessely probably had a point but screwed up because he thought he had a great insight into an illness when in fact he didn't. Eventually he realised just how badly he had handled things but managed to talk himself out of any repercussions.
 
Peter T said:
I have no problem with charities and organisations using just ME
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I've no problem with them using it in their names and web domains—changing registered names isn't trivial, and it calls for an explanation that isn't especially easy to summarise. Nor do I mind them sometimes using 'ME' as a shortcut in verbal presentations.

I would like them to use ME/CFS on their websites and publications, though, and in press releases and the titles of presentations. If nothing more than to make clear that (a) things have moved on, and (b) we're all on the same page over it.
 
A few years ago (maybe 3) I asked my (very helpful) GP to change my diagnosis on my notes from CFS to ME/CFS. She agreed but then told me that the system would only allow her to enter ME or CFS, so I asked her to change it to ME. From what Jo says above, I wonder if that was a mistake but I doubt it makes much odds.

I don’t know if ME/CFS is an option on GP systems now. If not, it should be.
 
Peter T said:
Personally, given ME/CFS is a place holder until we have better understanding of the aetiology, I have no problem with charities and organisations using just ME though even this may seem contradictory.
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The problem as I see it is that it means they attract all the meme-spreaders like a magnet attracts iron filings. So we have MERUK, which does some great work funding research, putting out articles on mast cell activation syndrome. We have AfME physicians prescribing mast cell drugs even for people with no mast cell symptoms. And so it goes on.
 
Robert 1973 said:
She agreed but then told me that the system would only allow her to enter ME or CFS, so I asked her to change it to ME. From what Jo says above, I wonder if that was a mistake but I doubt it makes much odds.
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I doubt it matters but it is important that GPs should have the option of ME/CFS and preferrably just that option. There are no NICE guidelines for ME. Which relates to another point - unless we get agreement on this studies recruiting patients or looking at epidemiology will continue to be screwed up by all the names. We need some sanity here. If charities are encouraging people to think they have ME and not CFS then how are we ever going to get any decent research done?
 
I think I’ve said it before but I’m hoping for a new name at some point. Because honestly there is so much baggage and misinformation. To anyone outside and even to many with the condition all his arguing over a name looks utterly bonkers.

Rebranding isn’t perfect but it happens because it often has benefits.
 
Most of us agree that there are many, many mistakes across ME/CFS, promulgated by advocates and enemies alike. Some are cringeworthy. Some are dangerous.

I still would caution about tearing things down without first having something to replace them besides theory and stats and definitions and methodological cautionary tales - all of which have their place, of course, but they are just so much window-dressing to the psychosomatic cabal..

Moreover, we better get it right. We need to avoid obvious mistakes like reducing PEM to fatigue, or positioning theory as fact, or any number of blunders that would undo goals and compound our hurdles. We need to avoid triggering wholesale in-fighting between patient groups. If we set about to correct other patient organizations, we cannot afford mistakes that the wrong ilk might seize and try to capitalize on..

Sorry if I cone across as too negative. I've seen this unfold before in a different medical community, and ultimately a wall was hit and a great deal of the advocacy faltered in the face of colossal indifference.

If ever there was a group that could steward it, however, it's this one.
 
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