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

Jonathan Edwards said:
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.
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That would still make the distinction between the people that think they have the right symptoms and the people that do have the right symptoms.

Is it a case or misunderstanding what the descriptions of the symptoms actually means? Like thinking they have PEM because they get DOMS?

Or having PVF that eventually resolves, but then interpreting lingering effects of e.g. deconditioning as still having PEM etc.?
 
Jonathan Edwards said:
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.
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Doctors might, but I don't know that the general public do. I think that's part of the problem - we have different sections of the population thinking different things about both stupid names. It's such a curse.
 
Utsikt said:
Is it a case or misunderstanding what the descriptions of the symptoms actually means? Like thinking they have PEM because they get DOMS?
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I think one has to assume that people who think they have disease but don't are not like you and I. That of course assumes you are not someone who thinks they have a disease but doesn't. I have worked out that this you are not but I am not sure I can say how.

The next step is to try to explain what is different about people who believe they have a disease they don't have (PWBTHDDH). Psychologists claim to know. I have always found that unconvincing. I have no idea. But in order not to treat people for the wrong illness I had to be able to make the distinction. I have often wondered what it must be like to have a mind and/or body that does not work like mine, and I end up realising I can never know and with neuroscience being helpless in this area I don't see anyone being able to explain.

PWBTHDDH are not that common. They might be 2% of the population. Which explains why there are about as many people who believe they have RA is actually have RA, RA being a common one to think you have. I have no idea how many people think they have ME/CFS who don't, compared to people who do, but lots of the may have gone to see Simon Wessely in the early years. People with ME/CFS are likely to be quite unaware of them, unless they pop up like Dr Garner or thingummy.

And it gets more complicated because there are exceptions like Dr Garner, who recanted his belief. There are almost certainly people who have what we call ME/CFS who believe they have a special ME disease defined by ICC criteria despite nobody knowing what these criteria actually refer to or why they were chosen. So Wessely was wrong to think the two groups are exclusive.

And all of this you learn as an intern/resident house officer/registrar taking stories from people night after night but most of us decide not to give lectures about it at gala dinners like Dr Wessely.
 
Sasha said:
I'd be delighted with just having one of those name-names, like Parkinson's or Crohn's. A name that means nothing is the perfect solution when you don't know what a disease is.
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Named after Johannes Kristof Blergo of Mannheim. Just like the Greenhouse effect was named after (a corruption of ) Otto von Greinhausen of Schleswig-Holstein.

This is actually a fertile area for academic dispute. Surgeons traditionally used a Pfannenstiel incision around the bladder area and we all thought this was after Heinrich Pfannenstiel of Thuringia. However, pfannenstiel simply means pan-handle, which is the shape of the incision.
 
Jonathan Edwards said:
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?
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I never got the sense that the major charities did this. They were always clear that they served the two labels, usually explaining them as alternative names for the same thing, sometimes explaining that some people saw them as different entities. They certainly didn't divide their advice into one set for one label and another for the other - that's a niche development.

Regarding the whole names-of-charities issue, the Irish ME/CFS Association (think @Tom Kindlon) has always been called that. There is also an Irish ME Trust, and in recent years, ME Advocates of Ireland. Maybe Tom has some insights.

It is not helpful to have people who happened to get an ME label because of who diagnosed them, and when they were diagnosed, trying to insist that people who got a CFS label because of who diagnosed them, and when they were diagnosed, have something different and trivial that responds to things like exercise or CBT.

There are no doctors who differentially diagnose between ME and CFS. (And if there are exceptions, then there should not be.) There will be plenty of doctors who differentially diagnose between ME/CFS on the one hand and chronic fatigue that they don't think is ME/CFS. I sometimes wonder if this is where some advocates get confused - since "Parkinson's" means "Parkinson's Disease" etc, do they think "chronic fatigue" is just an abbreviation of CFS?
 
Jonathan Edwards said:
I think one has to assume that people who think they have disease but don't are not like you and I.
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Probably not. Although I was halfway on some of the meme trains before S4ME convinced me the labels are useless. Even though I was never able to make sense of them, so the conclusion was welcome (because it meant I didn’t not understand something I should understand).
Jonathan Edwards said:
PWBTHDDH are not that common. They might be 2% of the population. Which explains why there are about as many people who believe they have RA is actually have RA, RA being a common one to think you have. I have no idea how many people think they have ME/CFS who don't, compared to people who do, but lots of the may have gone to see Simon Wessely in the early years. People with ME/CFS are likely to be quite unaware of them, unless they pop up like Dr Garner or thingummy.
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Maybe the PWBTHDDH are more likely to gravitate towards psychosomatic practitioners, or because BPS seems to be the first line response everywhere, they will get screened out eventually.

If you’re not really sick with anything, but you don’t feel too well and your body acts a bit weird, GET or some incremental programme might be a good enough way to ease you back into a more normal life.
 
Evergreen said:
I never got the sense that the major charities did this. They were always clear that they served the two labels, usually explaining them as alternative names for the same thing, sometimes explaining that some people saw them as different entities. They certainly didn't divide their advice into one set for one label and another for the other - that's a niche development.
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That is probably true for much of the material charities put out. However, it is interesting that there is one major UK group that has wanted to stick to ME, and that gets used in political contexts even if not in patient information. I also think that there are a number of people within the charities who would prefer to stick to ME, sometimes along with a significant amount of baggage of the 'biobabble' sort. What is not in doubt is that major charities have allowed biobabble and BACMEbabble to mix in with what they are putting out. In recent years I would agree that the major charities seem to have usefully updated their position, but I worry that in the last year or two there has been some backsliding in one or two places.
 
Sasha said:
But they tell you they think people who say they have ME are deluded but people who say they have CFS aren't?
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It's a bit more subtle than that. They may think someone who says they have CFS may just have been misinformed by a dopy NHS doctor. They think someone who thinks they have ME is more likely to be a disciple of a potty one.

Sasha said:
no one is ever going to say this kind of stuff to our faces
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which is the catch

Fortunately, not everybody is like that, but a lot have been and still are.

What I like about ME/CFS in a way is that it is so inelegant that it must have been thought up for considered pragmatic reasons, so there is a chance that even these cynics will stop and think "that sounds like it must actually be in the books". I find in social conversation that it often does that. People don't immediately think 'I didn't expect Jo to be on about that stuff'. They frown slightly in the way people do when they are listening to hear more. The baggage has been left at the door.
 
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Dr Byron Hyde is the medical adviser to the 25% ME group.

The group supports ICC criteria.

Most of the group can't read/have no working memory. We rely on others, like Wendy B and Colleen Steckel, to share and pass on info, which we then share - often without being able to read it ourselves.

It took me several years to learn the names and broad differences of the criteria - Wendy B's fb posters helped me do that.

But as to learning the ins and outs of what research is meaningful and what is not, I have no hope of discerning this for myself, which is why I am here.

And I still haven't discovered what the forum thinks about many topics other than a stray remark here and there. It's hard for me to read and search. So a summary of this forum's conclusions would be great,

It would be very helpful if this forum would put together simple memes or posters that can be shared eg the case against MCA; or why 'being bendy' is not helpful criteria. These could be shared on fb and twitter. Memewarfare.
 
Jonathan Edwards said:
Nobody is talking of policing but if misguided patients are putting out stuff that contributes, however unintentionally, to deaths and children being taken into care people need to realise what is going on.
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It's disbelieving doctors that cause that, and I'm pretty sure the disbelief predates the term neuroimmune in the context of ME, by decades.
EndME said:
they managed to set up the organisation and raise $+40 mil in a much shorter time period.
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Which ME charity gets that kind of money?
 
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Fero said:
It would be very helpful if this forum would put together simple memes or posters that can be shared eg the case against MCA; or why 'being bendy' is not helpful criteria.
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As I understand it, the simple objection is that there's no evidence for them being meaningful diagnoses.

If you ask people to present evidence for these things, they mainly offer the pet theories of private doctors operating on the fringes. Even when references are quoted, you quickly see that it's all circular and self-referencing. There isn't any actual data.

The GPs people with ME/CFS see in their local clinics certainly won't view it as evidence. They're likely to think it's internet nonsense. That means people who tell their GPs they have these syndromes risk not being taken seriously.
 
Jonathan Edwards said:
What I like about ME/CFS in a way is that it is so inelegant that it must have been thought up for considered pragmatic reasons, so there is a chance that even these cynics will stop and think "that sounds like it must actually be in the books". I find in social conversation that it often does that. People don't immediately think 'I didn't expect Jo to be on about that stuff'. They frown slightly in the way people do when they are listening to hear more. The baggage has been left at the door.
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Interesting. Yes, I am coming around to this now. I think in the future when people ask me what illness I have I will say ME/CFS. I can't bear saying CFS alone.

I will still say ME on the forum though?
 
Fero said:
Dr Byron Hyde is the medical adviser to the 25% ME group.

The group supports ICC criteria.

Most of the group can't read/have no working memory. We rely on others, like Wendy B and Colleen Steckel, to share and pass on info, which we then share - often without being able to read it ourselves.

It took me several years to learn the names and broad differences of the criteria - Wendy B's fb posters helped me do that.

But as to learning the ins and outs of what research is meaningful and what is not, I have no hope of discerning this for myself, which is why I am here.

And I still haven't discovered what the forum thinks about many topics other than a stray remark here and there. It's hard for me to read and search. So a summary of this forum's conclusions would be great,

It would be very helpful if this forum would put together simple memes or posters that can be shared eg the case against MCA; or why 'being bendy' is not helpful criteria. These could be shared on fb and twitter. Memewarfare.
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Thank you @Fero, for this post. I started to read the discussion yesterday but it left me emotional, because I only got more confused. It's really tricky. People are of course allowed to have a discussion that adds value for them. But for the ones who have problems reading, a summary would be super helpful. If possible. :)
 
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