Robert 1973
Senior Member (Voting Rights)
Do you have a copy of this letter? Do you know who or where it came from?
It would be useful to have a copy.
How do we stop charities and influencers spreading bio-babble about ME/CFS?'
- Thread starter Sly Saint
- Start date
It would be useful to have a copy.
Sasha
Senior Member (Voting Rights)
I can imagine FAQs both in the form of a factsheet and in the usual FAQs format (quite often drop-down) on a webpage. We could have it all!
I've just happened to look at the ME Association's article 'LONG COVID AND ME/CFS: Are they the same condition?'
it's full of stuff about mitochondrial dysfunction, dysregulation of the HPA axis, microclots, persistent viruses, and so on. I don't know how patients are supposed to know that these ideas aren't watertight (and will result in clinicians believing they should be shunned) when the major patient charity is publishing them.
it's full of stuff about mitochondrial dysfunction, dysregulation of the HPA axis, microclots, persistent viruses, and so on. I don't know how patients are supposed to know that these ideas aren't watertight (and will result in clinicians believing they should be shunned) when the major patient charity is publishing them.
Utsikt
Senior Member (Voting Rights)
They also recommend pacing up:
That publication is one of the things that contributed to me continuing to do far too much with my post-covid ME/CFS because I was «stable» at a very high symptom baseline (from constantly triggering PEM).
Mentioning these ideas may get patients shunned by some clinicians, but in my experience, the clinicians are more likely to be the ones advancing these ideas and patients more likely to be shunned for questioning or refuting them.
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Sonya has done a lot of great work. However, it seems that the medical service that AfME runs is full of the usual unevidenced diagnoses and treatments, and there were still problematic things on the website last time I looked, so there's some work left to do. The UK MEA seems to have been determined to go backwards in the last couple of years.
It's hard to get patient charities to improve while people who are happy to promote unevidenced ideas of various sorts are on the boards of them. I think that is one way informed patients and supporters can make a difference - by getting on the boards of the charities. That can then lead to informed people being included in workshops and policy making.
Jonathan Edwards
Senior Member (Voting Rights)
That is what is so worrying. I feel that this misinformation has been accepted as the norm for too long. The MEA currently seems to be in a mess, and as Hutan says, going backwards. AfME has its problems but at least Sonya will engage in sensible debate and has shown she is prepared to respond quickly to concerns.
There are two lots of clinicians and they hate each others' guts. Or at least that is what they will tell you. In reality there are clinicians who mix and match memes to suit themselves - biobabble with psycho sauce or psychobubble with biosqueak. But it is the biobabble put out by patient advocates (which mostly comes from fringe private physicians) that I think does most harm. Adverts from Lightning Process converts may come a close second but are less likely to impact of very severe cases and safeguarding notices.
Evergreen
Senior Member (Voting Rights)
Can you explain what is actually happening - are people with very severe ME/CFS giving clinicians really bad info that annoys the clinicians and leads the clinicians to think they are mad and not feed them? Is bad info from families to clinicians a key factor in whether clinicians initiate safeguarding? What kinds of things are clinicians actually complaining about?
That will help us to understand what needs to be combatted.
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Jonathan Edwards
Senior Member (Voting Rights)
Yes, I have been told this by well known senior NHS ME/CFS clinicians, with specifics.
The misinformation is clearly being cited by families and as far as I know is the main reason why safeguarding is considered relevant. I may be wrong but I am not sure what else would lead to safeguarding orders?
Families insist that sitting up is dangerous for the brain and that exertion will cause neuroinflammation. We cannot be sure that there isn't a grain of truth in those but we have no evidence and it convinces health professionals that the family environment is toxic.
Things like the advice that the person with ME/CFS will only get better if they rest completely in bed for weeks. I know this occurs and I know who gives this advice and so do the NHS clinicians who react against it. Again there might be a grain of truth in the advice but we do not have evidence. The additional problem is that there are networks of advocates who spread this advice around mixed up with bogus physiology.
Peter T
Senior Member (Voting Rights)
I think it is surprisingly difficult to describe our symptoms in purely neutral terms, independent of any theoretical constructs, this is illustrated very well when we try to discuss symptomatology here. So it is unsurprising that ‘patients’ latch on to any explanation offered by clinicians no matter how problematic it may be.
Because ME/CFS involves delayed responses, and cumulative and interactive impacts and significant within and between individuals variation, it is hard to make sense of any patterns. It took me over a decade, learning the concepts of PEM and orthostatic intolerance and identifying my food intolerance, to approach an understanding of my day to day variation, even then there is still variation on a longer time scale that I can not say if it is or is not related to cumulative activity levels. As we spend years, even decades, trying to make sense of our little understood, indeed frequently misunderstood, condition, for many the explanations we focus on may become part of our identity.
Further the range of specific symptoms we experience do not obviously fit into any single biological system or medical specialism, making it harder to even be able to say what we are trying to understand.
I don’t think it is fair to criticise individual patients becoming over attached to specific terms or models, however I agree professionals and our patient organisations need to be much clearer and up front about what we don’t know.
Because ME/CFS involves delayed responses, and cumulative and interactive impacts and significant within and between individuals variation, it is hard to make sense of any patterns. It took me over a decade, learning the concepts of PEM and orthostatic intolerance and identifying my food intolerance, to approach an understanding of my day to day variation, even then there is still variation on a longer time scale that I can not say if it is or is not related to cumulative activity levels. As we spend years, even decades, trying to make sense of our little understood, indeed frequently misunderstood, condition, for many the explanations we focus on may become part of our identity.
Further the range of specific symptoms we experience do not obviously fit into any single biological system or medical specialism, making it harder to even be able to say what we are trying to understand.
I don’t think it is fair to criticise individual patients becoming over attached to specific terms or models, however I agree professionals and our patient organisations need to be much clearer and up front about what we don’t know.
Kitty
Senior Member (Voting Rights)
I wonder if it's partly because they worry that the truth—that their child can't sit up because it causes intolerable symptoms—isn't 'medical' enough? Or that in order to advocate for their very ill child, they have to find justification for allowing them to lie down if they need to?
If so, charities need to be encouraging them to have the confidence to tell doctors what the problem is, not what the cause of it is.
Peter T
Senior Member (Voting Rights)
Doctors need to be aware that there is so much misinformation out there, that everyone is struggling to make sense of something that, given our current knowledge, does not make sense.
Their job is not to be judgmental of unevidenced patient beliefs, many of which, as has already been said, originate from clinicians; their job is to work with their patients to understand what the presenting symptoms actually are, and to seek to manage those symptoms.
Their job is not to be judgmental of unevidenced patient beliefs, many of which, as has already been said, originate from clinicians; their job is to work with their patients to understand what the presenting symptoms actually are, and to seek to manage those symptoms.
Jonathan Edwards
Senior Member (Voting Rights)
I think the answer is rather different. Ordinary people often behave in counterproductive and irrational ways. It isn't their fault and it isn't abnormal, let alone pathological. As Bernard Shaw pointed out, since prehistoric times people have wanted medicines and doctors despite everything before 1940 being just a placebo, or worse. You cannot blame people for believing stuff, it is human nature. But I think you can blame people for encouraging other people to believe stuff without due reason.
The charities just need to move in to the real world and stop being belief hubs. That might dent the donation rate but hopefully that will be compensated for by enthusiasm for real research.
This is really all about the busybody influencers.
Evergreen
Senior Member (Voting Rights)
That's helpful, thanks.
For example, sticking to just what happens to the person if they sit up/are in a bright room etc, and not suggesting why. If giving written info, give only a summary of how the person is, not printouts from websites, no matter how convincing the person or family thinks that info is. An exception might be the section of the NICE guideline on severe ME/CFS.
Again, I think this info should be shared and alternative approaches advised.
Again, people need to be advised against this, and explanations given for why.
But in the case of very severe ME/CFS in hospitals, I imagine this would be said by families when the person is being urged to do more than they're able for even when they're not in a malnutrition crisis e.g. expose them to more light, more sound, sit up etc. And the families may have experience of how the person has responded to previous hospital admissions. They may well have had to rest completely in bed for weeks after those admissions.
I think it would be reasonable for families to explain that just being in hospital is more exertion and stimulation than the person is able for at home, and to say that they'd like the focus to remain on feeding during the admission.
Maybe S4ME could come up with a factsheet-type-thing about communicating with clinicians?
I think it would be very helpful to feed this (and the other info you provided) back to groups like the 25% ME group, and make specific suggestions of how to communicate with clinicians in a way that is least likely to reduce credibility and lead to harm.
For example, sticking to just what happens to the person if they sit up/are in a bright room etc, and not suggesting why. If giving written info, give only a summary of how the person is, not printouts from websites, no matter how convincing the person or family thinks that info is. An exception might be the section of the NICE guideline on severe ME/CFS.
I can see that misinformation would exacerbate the situation, and may well be a major contributor to some safeguarding orders. But Jonathan, no matter what we say, we are considered mad. They consider all of our symptoms mad. Have to go to bed after a conversation? Mad. Feel worse with exercise? Mad. Noise sensitivity? Light sensitivity? Mad. Pain despite normal ENA panel? Mad.
Again, I think this info should be shared and alternative approaches advised.
Yeah, any time words like "dangerous" or "toxic" are used, I groan. Ditto for inflammation, particularly neuroinflammation.
Again, people need to be advised against this, and explanations given for why.
Yep, not a good idea in general.
But in the case of very severe ME/CFS in hospitals, I imagine this would be said by families when the person is being urged to do more than they're able for even when they're not in a malnutrition crisis e.g. expose them to more light, more sound, sit up etc. And the families may have experience of how the person has responded to previous hospital admissions. They may well have had to rest completely in bed for weeks after those admissions.
I think it would be reasonable for families to explain that just being in hospital is more exertion and stimulation than the person is able for at home, and to say that they'd like the focus to remain on feeding during the admission.
Yes, absolutely.
Maybe S4ME could come up with a factsheet-type-thing about communicating with clinicians?
Jonathan Edwards
Senior Member (Voting Rights)
This really belongs to the new thread but nobody is wanting to criticise individual patients for being attached to terms and models. The criticism is of those who then claim to know and to preach to others. In addition to the professionals and formal patient organisations there are networks that operate out of view and they can have huge influence.
Jonathan Edwards
Senior Member (Voting Rights)
I don't think it is just a major contribution, I think there is a key difference between the madness of saying you are sensitive to light and use of beliefs by family. I am pretty sure it is the deciding factor in safeguarding in many cases.
I think many do. But for most of the cases we hear about in the media the beliefs are what come across. I can understand the use of safeguarding orders if clinicians genuinely believe they have useful treatments. The time has come for them to accept that they don't, but it is embedded in all the Royal Colleges and their vested interests and will take a major sea change to reverse.
The charity people have been in this game a lot longer than I have. They know what goes on. If I find individuals who seem to understand the situation I share thoughts but very often I get nowhere.
I've a couple concerns about this thread.
The difference between patients who spread biobabble and clinicians/researchers who spread biobabble is power. Power resides with the latter group. There is no equivalence here. The onus is squarely on clinicians and researchers. Patients are just trying to pick up the slack left by the absence of the clinicians and researchers. If they get some things wrong, there is little surprise there. That the clinicians and reserachers are leary of those errors speak to their issues, not the patients'.
Also, I cannot help but wonder who emerges as the arbiter of what is labeled biobabble? Far too often this is not resolved by reality but by beliefs and embedded biases instead. That applies doubly for clinicians/researchers.
The difference between patients who spread biobabble and clinicians/researchers who spread biobabble is power. Power resides with the latter group. There is no equivalence here. The onus is squarely on clinicians and researchers. Patients are just trying to pick up the slack left by the absence of the clinicians and researchers. If they get some things wrong, there is little surprise there. That the clinicians and reserachers are leary of those errors speak to their issues, not the patients'.
Also, I cannot help but wonder who emerges as the arbiter of what is labeled biobabble? Far too often this is not resolved by reality but by beliefs and embedded biases instead. That applies doubly for clinicians/researchers.
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I would not be suprised if this is a significant factor. For Long-Covid we saw that the organisation that followed the "most aggressive in words biobabble trend" was by far the most succesful in raising funding. Whilst some charities and researchers are struggling to get pennies together they managed to set up the organisation and raise $+40 mil in a much shorter time period.
I think mostly it is largely researchers that are pumping out their ideas presenting them as facts, as they always have been. Then there's always some physicians that latch onto those things and claim great success. For families and patients that information is often impossible to judge because the theory has been put out by someone that from what all they can see is a prolific researcher (how on earth should they know that a researcher with an H-index above 130 is not a credible source?). It seems to me that was what happened with the triple anticoagulant therapy.
I'm not even sure things are that different in principle for ME/CFS, tonnes of people follow the path of an "untested but novel treatment for cancer in America based on a brand new idea" in the hope of getting their life back, the problem for ME/CFS is, there's nothing else that is credible, only these "untested but novel treatments based on brand new ideas" whilst the alternative is that almost every other physician still prescribes GET and CBT. I find it hard to see how things will change quickly as I think the problem extends well beyond a handful of fringe physicans and charities. It seems the German government has been discussing "off-label treatment for Long-Covid and ME/CFS" with all those medications that are otherwise described by fringe physicians, with the advice handed out by those people that are considered leading figures in their country. How should a family member or patient in Germany judge that situation? What should a person in the UK think about that? I'm not surprised if some come to the conclusion that Germany is simply ahead of its time whilst the UK is still latched onto CBT/GET. If not even Cochrane seems to able to tell apples from oranges and NICE has the same problems how are patients supposed to tell truth from storytelling?