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

I had a very good experience with my new GP recently. I needed a renewal for disability and she went back to 1991 in my medical files when I first became ill. She got it, and told me that it's a diagnosis of exclusion and has no biomarker. I wrote out my experience with delayed PEM, uploaded it on their secure portal and she understood when we had our phone appointment. The less we say, the better, and specialists are worst in my experience.
 
Jonathan Edwards said:
"The hypermobility service was not a problem in the beginning. It was only later that the word got around amongst patient organisations that this was the best centre for JHS and we were overwhelmed with referrals. By that time we were not able to restrict the demand at all and it caused a lot of unhappiness amongst the consultants here because many of us who had not wanted to be involved were finding that JHS became a large part of our practice. I think that all of us would want to make absolutely sure that nothing like this happens again. It is possible that this trial will lead to a large demand for rituximab by patients with ME/CFS in years to come. I think that we need to set clear boundaries for the involvement of UCLH rheumatology in this area of medicine from the outset."
Click to expand...
Jonathan Edwards said:
No this would be if the trial was positive and the treatment was licensed. In other words the writer did not want to be providing an effective ME/CFS service in the future.
Click to expand...
In fairness, the prevailing theme here is the writer's dislike of (a) hypermobility, but particularly (b) pwME.

There are different ways to solve these issues. If the hypermobility service was getting overwhelmed with referrals, the consultants who had wanted nothing to do with it in the first place could have said "We won't be part of the hypermobility service any more", and they and their colleagues could have decided how they wanted to deal with the referrals. If large numbers were inappropriate referrals, then that could be fed back to the GPs, or specific criteria set for what would be considered an appropriate referral. If large numbers of inappropriately referred patients reported that they asked for a referral because of info from patient organisation X, then the consultants should have engaged with patient organisation X. If an audit showed pwME were not benefitting from referral to the service, then referral criteria could be changed to reflect this. If it was a total farce, close the service, or restrict it to the consultants who have a special interest.

The second part, that even if ritux had been found to be effective, they wouldn't want to see us.

So while they abhorred seeing large numbers of us, this person sounds like they would rather see none of us at all.
 
duncan said:
I don't think this credibility with patients' explanations is necessarily at the root of the problem nor peculiar to ME/CFS. I don't think it's an accuracy thing as much as it is a siloed thing compounded by arrogance. I see it in cardiologists when I attempt to explain a channelopathy''s potential import to their cardiac patients. I see it in GP's and other clinicians when trying to explain bartonella or neuro-Babesiosis. I've other examples, but my sister who had been a nurse for 40 years before her retirement put it well: Don't try to correct your doctor, don't try to educate them.

Now that's an indictment of an industry, and, exceptions aside, testimony to how the medical community at large perceives as the proper place for patients.
Click to expand...
I think your sister's right.
 
I Understand @hotblack we just need to leave out terminology that doctors don't understand and not willing to learn. If they can understand that the patient is disabled then that's a start for care and disability benefits.

The ME/CFS doctor I saw in the early 90s did some blood work which turned out normal. He sent me to a neurologist to r/o MS. He filled out my disability benefit forms based on my onset, relapsing history and r/o MS. He treated pain and insomnia. I met 2 people in person who tried to get a diagnosis with him, and I warned them not to mention treatments because he turns stone cold when patients bring this up. They didn't listen and started talking about nutrient IV therapy, high dose B12 et and he booted them out of his clinic.

They won't tolerate patients telling them what to do.
 
hotblack said:
So I can sort of see where @Jonathan Edwards is coming from and I do think we need to be much better at shutting down misinformation but I am very sceptical that doing so would greatly change the outcomes for us.
Click to expand...

I don't think this makes any difference to the great majority of people with ME/CFS. After all there are no treatments. But if means a destroyed life for one or two people it is important.

There is the knock on effect that if these memes are prevalent in advocacy and charity groups then you get lobbying for physicians who perpetuate the memes to be involved in services and education of others. The fault is with the medical profession but that is not a reason not to try to mitigate it.
 
We should challenge the misinformation because challenging the misinformation is the right thing to do, not because it is linked to any worsening of outcome for patients.

I don’t think we have conclusive evidence that there is a link, only anecdotes, and saying there is, is perhaps unhelpful in achieving the aims of challenging the misinformation.
 
Evergreen said:
So while they abhorred seeing large numbers of us, this person sounds like they would rather see none of us at all.
Click to expand...

Yes, that was the point, if put slightly differently. And note that I had said that the department welcomed people with pain and fatigue in the 1990s and enthused about developing a service. They were put off in the 2000s by all the people with 'hypermobility syndrome' who came with memes about their diagnosis. In this case they were largely fed in by physios who thought hypermobility was a real buzz of a disease and loved to be seen to be sending patients to the great expert in London. Nobody ever showed that hypermobility had anything to do with most of their problems.

At one point the inflow for this service was directed to my clinic. (I had been asked by the head of department to take the whole thing over and declined (he muttered "you bastard). I had been involved in hypermobility years before and could see there was no evidence base.) But a few patients came to me and they were all keen to tell me all about their syndrome and what special physio they were ready to receive. When I said I didn't know of any they were badly upset.

The whole thing was primarily driven by physios but also by patient support groups and local newspaper articles. It gradually morphed into 'hEDS' and some of our trainees went out to tell the world and make a nice income from it. And the of course people started coming with ME and hEDS. As to what these poor people actually had wrong, goodness knows.
 
hotblack said:
I don’t think we have conclusive evidence that there is a link, only anecdotes, and saying there is, is perhaps unhelpful in achieving the aims of challenging the misinformation.
Click to expand...

Well, I have tried keeping quiet about it for about ten years now and the situation just seems to get worse. I find it hard to dissociate the right thing to do from trying to avoid deaths.
 
I've got a bit distracted and have lost the plot a bit but is our best plan so far a FAQ sheet (see what I did there?) or do we need something different/addition/more epic? I can't see dodgy doctors being corrected by a FAQ sheet (but they may be irredeemable).
 
Valerie Eliot Smith said:
Returning to the beginning of this thread, and the previous one from which it was moved, an obvious question arises:

Since many voices on this forum are committed to the term "ME/CFS" and against the ME-ICC, why was/is the forum not named "Science for ME/CFS"?
Click to expand...
We've only just come to favour it since a paper that Jo published a year or two ago.
 
Valerie Eliot Smith said:
Since many voices on this forum are committed to the term "ME/CFS" and against the ME-ICC, why was/is the forum not named "Science for ME/CFS"?
Click to expand...

I have thought quite a bit about that and from my perspective it is because the forum started in 2017 and the first official/authoritative usage of ME/CFS I know of is the NICE 2021 guideline. The CCC people had chosen it in 2003 but things had been fluid. The research community had settled on ME/CFS informally by 2021 but the importance of the distinction certainly did not become clear to me until about a year ago when I realised that ME was still being used in Acheson's sense to imply a disease with focal neurological signs (even if these were rather elusive) and that misinformation about this was widely circulated.

The paper mentioned: https://www.qeios.com/read/NXCXM1
We have subsequently talked about changing the name but it needs some thought.
 
Sasha said:
is our best plan so far a FAQ sheet
Click to expand...

I think so.
Sasha said:
I can't see dodgy doctors being corrected by a FAQ sheet (but they may be irredeemable).
Click to expand...

Some are already fading out of the picture. I think some of the new zealots may actually take notice if we are pointing out that microclots and neuroinflammation are at present mere speculations.
 
Peter T said:
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.
Click to expand...
For sure there is clearly a dynamic where patients explain our experience, no one understands it, and so we shift to trying to match the language we think they expect.
Kitty said:
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?
Click to expand...
Pretty much. Symptoms and functioning are not clinically relevant since they don't light up anything about biology. Biology is demanded, and so biobabble is delivered. Not much of a choice here, this is three wrongs in a trenchcoat.

Explaining this from experience and descriptions of symptoms never works. It makes sense for people to try to speak the coded language of medicine, since nothing else works. It doesn't work either, but since the whole expectation is that we're supposed to do what we always do at first, use simple subjective words of experience and symptoms, and that never works, there are no alternatives, and since physicians clearly only want to know what's wrong biologically, that's where people go.

Most of this is simply derived from "there is nothing biologically wrong with them". Which is false. Which leads to overcompensation, as anyone falsely accused of anything will naturally do.

Every profession has to deal with things like this. Difference is they don't punish anyone for it, since that's extremely unprofessional.
 
I don't see this as a ME specific issue in medicine, but an issue with medicine as a field unable to cope with not having the answers. I definitiely put the responsibility at the feet of health care professionals and not patients. Yes, patient organisations should not put out misinformation, but there is quite a lot of it coming from the healthcare sector and expecting (mostly) lay persons to stand up against doctors/researchers with years of experience is not fair. And the power dynamic is squarely in favor of the doctor/researchers.

Should we stop helping people with food allergies since there are masses upon masses of social media influencers who talk about different exclusion diets? No. And if someone comes to me and tells me they have an allergy, I will simply ask if it is in fact an allergy and not say an intolerance - it's not hard to ask why they use specific terms/phrases. They might even have been told by a doctor to avoid a specific food - and then other doctors will make fun of them for "believing whatever they read online".

I'm more worried about the harm doctors do when they don't know what they are talking about. I've met doctors who mistake food intolerances for allergies, but for some reason I am not allowed to make fun of them, but it is somehow accepted to do so if it's a patient making the mistake. It is a culture problem.
 
You must log in or register to reply here.
Back
Top Bottom