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

Evergreen said:
Maybe S4ME could come up with a factsheet-type-thing about communicating with clinicians?
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But if S4ME is going to advise families to stick to saying 'my child can't do XYZ because it makes them ill', rather than 'my child can't do XYZ because it makes them ill due to [unproven theory]' because the second form of words will expose them to safeguarding procedures and allegations of creating a toxic family environment, it'd better be sure that actually is the case, and that sticking to the first form of words won't attract the same allegations regardless.
 
EndME said:
Is it now time for a new type of ME/CFS charity based on stuff like DecodeME? How do we know, when we don't even know whether we can convice some Bob?
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Bob would be convinced if I got on to him.
It is time for a new type of ME/CFS charity but in the UK my feeling is that that is more likely to be built out of reshaping Action for ME in ways that have already been embarked on rather than creating something new.
 
Eleanor said:
But if S4ME is going to advise families to stick to saying 'my child can't do XYZ because it makes them ill', rather than 'my child can't do XYZ because it makes them ill due to [unproven theory]' because the second form of words will expose them to safeguarding procedures and allegations of creating a toxic family environment, it'd better be sure that actually is the case, and that sticking to the first form of words won't attract the same allegations regardless.
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I am quite sure that the second form of words makes things worse. I think that is enough.
 
Robert 1973 said:
If children are being taken into care and people are being denied lifesaving interventions due to biobabble which originates with private doctors, why is the GMC not taking action against those doctors?
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I imagine part of the problem is that a lot of the fringe doctors spouting this stuff aren't in the UK. Yes there are some, but as far as I can see the loudest and most persuasive of the influencers are outside the country. The whole MCAS field seems to have been invented by one guy in the US, for instance, and CCI seems to have been something of an EU – USA collaboration.

Some of the culprits are researchers rather than clinicians. And the highest profile influencers appear to have no relevant qualifications at all, which is probably why they can build their platforms; people earning their living as physicians or researchers wouldn't have time.
 
Robert 1973 said:
Do you have a copy of this letter? Do you know who or where it came from?
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I don't have the letter yet, although I have evidence that I received a copy. I think the email trail may be lost though. We may still find it. This was from subsequent correspondence, which gives a flavour:


"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."
 
Jonathan Edwards said:
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."
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Do you think that means people asking to be treated ahead of the trial result, or if the outcomes weren't very convincing?

Rather than after a trial had shown benefit, so patients wanting to be assessed for treatment was reasonable?
 
Personal experience:

Before I knew better, I would talk privately about viral persistence, neuroinflammation, microclots etc. I never shared that information publicly or claimed to know the biology behind LC or ME/CFS, but when certain prominent physicians and researchers made very certain statements about it I had no reason to not trust them.

That being said, my GP did a terrible job at talking to me about my condition. They never told me «I believe in your symptoms and that they get a lot worse when you do things, but we do not know why it happens». Instead, they jumped straight at asking me about my mental health, fear, activity avoidance long before I ever mentioned any biobabble.

I was told that my reaction to exertion or stimuli was normal and expected when I had been inactive for a long time.

It went so far that I had to get a therapist to write them a letter that said my mental health was not the cause of my symptoms, rather the opposite - I would have been worse off without my fortunate ability to deal with this nightmare.

My GPs’s immediate jumps to a psychosomatic explanation for my condition is what drove me into the arms of the biobabble practitioners. But, it was prominent patients and patient associations that made it so that I knew who the practitioners were.

So in some respect, you could say that the patients/associations and the GPs enabled the biobabble, even though the practitioners and researchers were ultimately responsible for it.
 
Evergreen said:
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?
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Yes. The doctor's eyes with glaze over when patients them that they have a neuroinflammation/neuroimmune disease, OI and MCAS. They don't understand what that terminology means and will dismiss it as hysteria.

I was once told by a virologist to stay off the internet when I told him I had a neuroimmune disorder when he asked me "what is CFS?". He was on the BOARD OF DIRECTORS for ME/CFS here in my city.

Then 6 months later I told I was tested for hypercoagulation activation and he rolled his eyes.
 
Eleanor said:
But if S4ME is going to advise families to stick to saying 'my child can't do XYZ because it makes them ill', rather than 'my child can't do XYZ because it makes them ill due to [unproven theory]' because the second form of words will expose them to safeguarding procedures and allegations of creating a toxic family environment, it'd better be sure that actually is the case, and that sticking to the first form of words won't attract the same allegations regardless.
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Yes, I'm not convinced that the unproven theories are the dealbreaker. Beliefs in daft things are not what comes across to me in stories of familes of children or of people with very severe ME/CFS, but I believe that Jonathan has heard other information from the coalface. Is it possible that it's the straw that breaks the camel's back in some cases? Maybe. Since it's such an awful experience for families, it's worth alerting them to something that might make it less likely.

And I do think that it's worthwhile explaining to patients more generally that getting into the "why" with clinicians can reduce credibility further, because the available explanations just don't have solid evidence behind them.
 
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?
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I think that’s the case. Pushing back against disbelieving medical establishment when in a time of crisis is hard. But maybe there’s a fine line here between being disbelieved and the safeguarding excuses?

The results are I think similar, the patient gets harmed either way, it’s just wrapped up differently. And that’s why I’m sceptical of some or the patient criticism here.

I’ve been ambulanced to hospital, been forced upright, been forced through things that left me in a terrible mess. It’s grim. And healthcare professionals are entirely to blame for that. I also tried extremely hard not to get trapped in the ‘this persons parents are just worrying about him’ situation and that combined with being an adult meant I got neglect rather than safeguarding.

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. If they are not listening snd nit taking this seriously they are not listening snd not taking this seriously. If they did it would be easy to confidently do the right thing. That they don’t is evident.

Edit: well after finishing writing that I see some other posts which seem to make the distinction, so maybe a bit of a wasted post! But will leave it up.
 
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Mij said:
Yes. The doctor's eyes with glaze over when patients them that they have a neuroinflammation/neuroimmune disease, OI and MCAS. They don't understand what that terminology means and will dismiss it as hysteria.
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Evergreen said:
And I do think that it's worthwhile explaining to patients more generally that getting into the "why" with clinicians can reduce credibility further, because the available explanations just don't have solid evidence behind them.
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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.
 
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