The use of the labels ME, CFS, ME/CFS

[Andy]

A slight tangent but I’m also reminded of this from @Andy which expresses it so well and changed how ai think about things



We need charities to be better and clearer on all this.
But patients do need to be able to tell their stories and talk of their lived experiences.

I stand by what I said in the original context, but in regard to those in the patient community who are members of "the ICC is the one true criteria that defines ME, and ME is something different to CFS and ME/CFS" faith I just wish that they would use their precious energy and time in more constructive activities.

I can accept that they probably genuinely believe they are right and, as I have no doubt that my opinion isn't going to change theirs, I don't bother wasting my energy and time on paying them any attention. Like any other, the ME/CFS patient community will always have its small radical splinter groups who are excessively vocal compared to the rest of the community - yet strangely they persist in remaining part of the community that they avow that they are not part of. They do seem very confused.

 

[Jonathan Edwards]

Do you @Jonathan Edwards or anyone else have any practical suggestions on what we can do to get the charities representing us to change their tune on these points?

But it doesn’t seem to have improved things.

I think part of the answer is just keep trying.

I didn't often tell my daughter what was good behaviour and what was not. When I did she appeared to ignore anything I said. But over the years I realised that she had registered it. Sometimes things take a while to sink in.

And it may be more a question of maximising interaction with those that get it rather than hoping to change those that don't. I hope to see Sonya in January.

 

[Evergreen]

I agree with @Jonathan Edwards that there is a problem with some patients broadcasting nonsense. But I agree with @Utsikt that most of that nonsense originates with doctors, and/or emerges from the vacuum.

If we had better information coming from doctors, that was backed by patients, including myth-busting, it would drown out those talking nonsense, as it does, most of the time, in other illnesses.

Certain topics need to be approached sensitively, because too many vocal people have been convinced of certain things. But with careful wording, I think you would be able to get a majority on board with better information, and on board with an agenda and priorities that do not alienate health professionals.

Regarding myth-busting, we could start on here by coming up with a sensitive, persuasive text that would explain things like "Is ME/CFS an autoimmune disease" and move on cervical instability, EDS, MCAS etc. "Are ME and CFS two different conditions?" You're not trying to convince the people who broadcast the stuff. You're trying to innoculate the people who might read it and believe it and say it to doctors, or who might be more circumspect about a label they've been given. And you're demonstrating to doctors that you're doing things differently.

If one of the major charities would get on board, that would be ideal, but it might take time to get to that point.

On a detail, and purely for myth-busting purposes, the second quote from @Sly Saint's post above includes complete fabrication - positing a distinction between PEM and PENE:

People often use the term “post-exertional malaise” or PEM when talking about what happens after exertion in Chronic Fatigue Syndrome (CFS). But what defines Myalgic Encephalomyelitis (ME) is not just malaise or tiredness — it is Post-Exertional Neuroimmune Exhaustion (PENE). The two terms sound similar, but they describe very different experiences and biological processes.

I find this twisting of terms to try to make distinctions so tiresome. The ICC created the term PENE to replace PEM because it didn't like the word malaise, not because they were trying to define two different phenomena in two different conditions. But while it's such a pity that Wendy Boutilier posted this (I don't have access to Facebook, so am judging that she is the author from Sly Saint's post, correct me if it was someone else), she wouldn't have were it not for the ICC. And that's by doctors.

Trying to stamp this stuff out would be like whack-a-mole. Better to crowd it out, and get trusted people on board, one by one.

 

[Jonathan Edwards]

always have its small radical splinter groups who are excessively vocal compared to the rest of the community

I am glad you are not wasting time on this, Andy.

My worry is that this is not a small radical splinter group. These memes are showcased by advocacy groups who have got the ear of the DHSC. There have been bids to set up services for severe patients using off label treatments. We have had clots given prominence. Even BACME dabbles in these things whenever it suits them. Some time back I decided not to take up the offer of joining ForwardME as much as anything because there was an insistence on ME rather than ME/CFS. There is a network of people we are only dimly aware of who spread the word to anyone desperate.

 

[Andy]

Do you @Jonathan Edwards or anyone else have any practical suggestions on what we can do to get the charities representing us to change their tune on these points?

One person presenting their opinion, whether it is shared by others, to a charity or organisation is, in my opinion, highly unlikely to bring about any change. Two routes that are, in my opinion, more likely to succeed are by showing that the opinion is supported by many others who are the target audience for the organisation, or to engage with the organisation in question over a period of time in order to build up their trust in your opinion.

 

[Jonathan Edwards]

But I agree with @Utsikt that most of that nonsense originates with doctors, and/or emerges from the vacuum.

That is not in doubt. But it doesn't alter the potential harm from the memes being perpetuated by the community.

If we had better information coming from doctors, that was backed by patients, including myth-busting, it would drown out those talking nonsense, as it does, most of the time, in other illnesses.

Yes, but that is not currently an option. There simply aren't any doctors to talk sense.

But with careful wording, I think you would be able to get a majority on board with better information, and on board with an agenda and priorities that do not alienate health professionals.

But we have been doing this with careful wording for eight years now. And the people who produce the memes know all about us.

Trying to stamp this stuff out would be like whack-a-mole. Better to crowd it out, and get trusted people on board, one by one.

I agree but there needs to be a realisation of how necessary it is to crowd it out. My recent experience with advocacy interactions with DHSC suggests that the opposite is happening.
People are free to express opinions but you cannot change things simply by sitting in a corner nattering to each other.

 

[Evergreen]

That is not in doubt. But it doesn't alter the potential harm from the memes being perpetuated by the community.


Yes, but that is not currently an option. There simply aren't any doctors to talk sense.



But we have been doing this with careful wording for eight years now. And the people who produce the memes know all about us.



I agree but there needs to be a realisation of how necessary it is to crowd it out. My recent experience with advocacy interactions with DHSC suggests that the opposite is happening.
People are free to express opinions but you cannot change things simply by sitting in a corner nattering to each other.

Are you the only doctor pushing back on some of this stuff out there in the real world? If so, it must be desperately frustrating. I think CS has pushed back on cervical instability, but is he perhaps on board with some of the others? Would it be worth you talking with him about what you're experiencing on the ground and seeing can you get more aligned? Or is that something you've already tried?

Well, we have a bunch of patients and some researchers here who might be able to produce an alternative to the memes, and, with help, broadcast it as loudly as they do.

There are certain things that have very wide support - that ME/CFS is debilitating, that what we need is research into pathophysiology, that people with severe ME/CFS should be tube-fed if they need it.

This all reminds me of Valerie Eliot Smith's conviction that we need a better, coordinated PR strategy.

 

[V.R.T.]

If we are waiting for this biobabble to stop before we can recruit doctors then we will be waiting til judgement day.

It will only stop when we know the cause of ME/CFS and/or find an effective treatment. Perhaps we can (and should) persaude charities not to spread unevidenced stuff, but the 'ME is different to CFS and has 1000 proven validated biological processes' people won't stop until there is real proof they are wrong.

Frankly, I think this idea of ME/CFS patients being unbearable to work with because they have 'those beliefs' is just pure prejudice. No different to pointing to individual immigrants or black people who have committed a crime and saying 'they're all like that, thats why no-one can stand them'. Or similar prejudice about gay people or women.

How do these patient beliefs get in the way of clinicians setting up a clinic and doing a trial? They don't. Imagine refusing to treat or research cancer because some people with cancer believe it can be cured by a raw food diet. This is no different.

The physicians don't want to help us because of the stigma. But they need a reason, they need a thing to point to to say its our fault. And these beliefs patients hold in the absence of real care and real information are easy to point to as that reason.

In my opinion what is really keeping doctors out of ME care and research is the stigma and reputational damage that they will face from fellow doctors if they legitimise 'those awful people'. Unfortunately there is no way around this but to find physicians intelligent and brave enough to see past the stigma and babble and start to do the necessary work. Maybe out of the goodness of their hearts but more likely because they see the huge reputational and professional opportunity that ME/CFS research represents in the longer term - to be one of the few pioneers who saw past the bullshit and found the answers. It would be career making.

@Jonathan Edwards tell your hesitant colleagues that most of these patients with false beliefs will gladly drop the biobabble like a shot when some solid evidence emerges. That what the biobabble proves is how deep the hunger for an answer here is. That there is a real chance of finding one. If that doesn't sway them, I doubt that the biobabble is the true cause of their hesitation.

The biobabble is the inevitable consequence of the void of care and treatment that has been caused by medical neglect. We cannot stop it until we stop the neglect. And whatever these doctors might say, if they don't want to help us because a some of us mistakenly believe there is objective proof of brain inflammation, they were almost certainly never going to help us in the first place.

(I logged back in to write this because i think its important, off again now!)

 

[Jonathan Edwards]

I think CS has pushed back on cervical instability, but is he perhaps on board with some of the others? Would it be worth you talking with him about what you're experiencing on the ground and seeing can you get more aligned? Or is that something you've already tried?

I have interacted with Charles a lot over the years. He seems to be taking a back seat these days, maybe he has not been so well. More people are needed.

 

[Utsikt]

The people with ME/CFS and associated charity advocates putting out misleading information are not in a position of ignorance. They are well aware that members are here, sensibly and with generosity of spirit, considering the evidence and rejecting the memes.

Do you feel like they don’t understand the science and the reasoning for why the claims are unfounded, or is it more a matter or not understanding why spreading unfounded claims ultimately is harmful to the patients?

 

[Robert 1973]

Regarding myth-busting, we could start on here by coming up with a sensitive, persuasive text that would explain things like "Is ME/CFS an autoimmune disease" and move on cervical instability, EDS, MCAS etc. "Are ME and CFS two different conditions?" You're not trying to convince the people who broadcast the stuff. You're trying to innoculate the people who might read it and believe it and say it to doctors, or who might be more circumspect about a label they've been given. And you're demonstrating to doctors that you're doing things differently.

I had the same thought. Most people on here are pretty stretched but I think it would be worthwhile if there are people with capacity who are willing to volunteer.

Tagging @ME/CFS Science Blog in case this is of interest.

Two routes that are, in my opinion, more likely to succeed are by showing that the opinion is supported by many others who are the target audience for the organisation, or to engage with the organisation in question over a period of time in order to build up their trust in your opinion.

It might be useful to show that the opinion is shared by ME/CFS researchers in whom ME/CFS patients have confidence.

If S4ME or anyone else were able to produce a suitable text to which researchers were willing to add their names, that could be shared with charities and others.

 

[Robert 1973]

I want to talk to Sonya about this (amongst other things) because she doesn't dodge issues and she has an amazing grasp of the complexity of what is going on. Her presentation on Thursday cut through everything. In a way all we needed to hear was Sonya. She told us that getting funding is still tough for the wrong reasons but nobody was going to stop her and Chris finding money.

And it may be more a question of maximising interaction with those that get it rather than hoping to change those that don't. I hope to see Sonya in January.

This is good to know. The work Sonya has done transforming AfME is at least one cause for optimism.

I have never raised money for AfME before but I am minded to start fundraising for their research work.

 

[Jonathan Edwards]

If we are waiting for this biobabble to stop before we can recruit doctors then we will be waiting til judgement day.

Well yes, but I am not advocating waiting. I am suggesting that the biobabble may have an important negative impact and since we have to do everything we can it makes sense to try to reduce it, especially amongst advocacy groups interacting with government.

the 'ME is different to CFS and has 1000 proven validated biological processes' people won't stop until there is real proof they are wrong.

How do we know that if we haven't challenged it repeatedly?

Frankly, I think this idea of ME/CFS patients being unbearable to work with because they have 'those beliefs' is just pure prejudice.

I am not arguing against that. I am not condoning anything, but this not the issue in hand. And I know for a fact that doctors are influenced this way. Thirty years ago managing and researching people with pain and fatigue was popular in the unit at UCL - trainees did doctorates on pain. Now the topic is taboo, and the argument I hear is all about patients' unhelpful beliefs.

I think members here with ME/CFS may see this from a different perspective. This forum collects people who don't have these fixed ideas. Other forums are very different. You get tarred with the wrong brush.

In my opinion what is really keeping doctors out of ME care and research is the stigma and reputational damage that they will face from fellow doctors if they legitimise 'those awful people'.

That may be part of it but I think for the younger generation of doctors it is as much as anything that they simply do not realise the disease exists. There are no clinics for people to be referred to (except community centres with an attached GP if you are lucky) so trainees simply do not see ME/CFS. I virtually never saw people with ME/CFS even in the old days.

@Jonathan Edwards tell your hesitant colleagues that most of these patients with false beliefs will gladly drop the biobabble like a shot when some solid evidence emerges.

I think things are more complicated. Those who don't go in for the biobabble do not need to drop it. Those who do have had plenty of time and information to drop it and continue to put it on Facebook.

The biobabble is the inevitable consequence of the void of care and treatment that has been caused by medical neglect.

I don't think it is. There are lots of incurable diseases we do not understand for which people get no care where there isn't the babble. And the majority of people with ME/CFS do not go in for babble. They come round to realising nobody knows. And even if you are half right, I am arguing that there is also a problem the other way. The babble is causing harm in stopping the reversal of the neglect.

It is a very uncomfortable thing to air but this may well be one issue I agree with Valerie E-S on!

 

[Jonathan Edwards]

Do you feel like they don’t understand the science and the reasoning for why the claims are unfounded, or is it more a matter or not understanding why spreading unfounded claims ultimately is harmful to the patients?

Both, I suppose. They clearly do not understand the science, despite proclaiming they know all about it. They also do not stop to consider how much harm they might be doing.

 

[Mij]

An then we've got infectious disease immunologist physicians like Michael Scoma MD on X who 'specializes' in complex chronic disease rambling on about MCAS, Long COVID and ME/CFS DAILY. It gives desperate patients hope.

Yesterday:
"Sustained disruption of the gut-brain axis marked by dysbiosis, epithelial leak, and maladaptive immune signaling may be a key contributor to chronic neuroinflammatory and fatiguing syndromes" and it goes on and on . . .

 

[Jonathan Edwards]

Regarding myth-busting, we could start on here by coming up with a sensitive, persuasive text that would explain things like "Is ME/CFS an autoimmune disease" and move on cervical instability, EDS, MCAS etc.

I agree with Robert that there may be a role for this. It sounds as if it would be along the lines of the factsheet project. One thing S4ME doesn't seem to do much is have a presentation page with quick links to information snippets, which most advocacy organisations will have. I can see an argument for not doing that if we thin S4ME is for discussion and support and not an information service, but maybe it is time to change that?

 

[Jonathan Edwards]

An then we've got infectious disease immunologist physicians like Michael Scoma MD on X who 'specializes' in complex chronic disease rambling on about MCAS, Long COVID and ME/CFS DAILY. It gives desperate patients hope.

Infectious disease physician NYC | Michael R. Scoma, Medical PC

Michael R. Scoma, M.D – best infectious disease doctor NYC. Receive personalized care from a board‑certified infectious disease practitioner.

michaelrscomamd.com

I note the tie.

 

[Robert 1973]

Jonathan, one thing I don’t get is why the doctors can see the biobabble, which in some cases can be difficult to assess and may be beyond many doctors level of knowledge, but not the psychobabble, which seems far more obvious.

 

[Utsikt]

Both, I suppose. They clearly do not understand the science, despite proclaiming they know all about it. They also do not stop to consider how much harm they might be doing.

It’s difficult to understand that you might be doing harm if you think you’re sharing facts.

Do you have any experience with turning someone in a context like this?

I can only speak of my own experience coming here and spending a few months unlearning things I thought I knew, but I was already sceptical of the memes because I couldn’t quite understand how it all was supposed to fit together. That made it easier to consider the arguments that meant that the ill-fitting puzzle pieces might be imaginary after all.

Maybe others also experience the same kind of doubt, but they don’t face it because they don’t know how to (as was the case for myself)?

Maybe that’s something to target?

I imagine that most of the people sharing memes don’t actually have any medical training, so they might be convinced if we show them that the methodology and logic isn’t good enough. @jnmaciuch usually do a very good job at explaining how the lab work might be sloppy and @Hutan et al had a valiant effort with the Peppercorn paper that the editors and authors chose to ignore.

 

[Hoopoe]

Why do people want to embroider their illness with this bogus physiology? I think that needs answering. It doesn't happen in other diseases much. And the embroidering leads to stories in the local papers every week about young Jenny who struggles terribly with Ehlers Danlos Synrome , to such an extent that she finds it very hard to do show jumping or run her marathons. And the natinal papers lap it up and have all sorts of bogus science stories. To be frank it doesn't surprise me that my colleagues are fed up.

Human beings tend to hold beliefs that feel good and give them strength.

The physiological explanation is a defense against disbelief, the enormous injustice this represents, and the small aggressions that patients are subject to.
It's also a reaction to desperation and lack of control. If the illness can be explained, then it feels like there is a possible path towards a treatment.

Human beings also abandon beliefs when they can see that they are false, but many patients don't have the training to recognize the problems with these beliefs. It's also an echo chamber thing. Patients seek these groups for mutual support and end up acquiring the beliefs of that group.

When doctors can't explain the illness to patients and abandon them, it's not surprising that a portion of these patients then try explain and solve it on their own.

The degree to which this happens is surely an indicator of how much an illness has been abandoned and marginalized.

As mentioned elsewhere I believe quackery surrounding ME/CFS is to a significant part driven by lack of recognition of the illness as serious. I wish the medical community could find the courage to say that they have unjustly neglected the illness and that psychobabble is irresponsible and harmful. From there it would be possible to move towards a consensus that the illness is unexplained and ther exist legitimate doubts about some aspects. As long as the professionals talk nonsense that immediately discredits them in the eyes of patients, the patients will try to find their own explanations...