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

[Jaybee00]

Don’t forget about the virus people!



“From Crisis to Cure: PolyBio is supporting top HIV researchers to pivot into the study and treatment of Long COVID. Watch the full video to learn how this collaboration is being maximized & driving forward innovative research: youtu.be/6kC1lyY6hPc?si…”

Because of the obvious connection between HIV virus and ME/CFS!

Polybio is influencing people to believe their problems are due to viruses.

 

[Trish]

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?

That is very much on our minds as the next big committee led project - to embed the forum in a website where we give prominence to the factsheets and a curated set of articles and resources.

 

[rvallee]

I do wish people would stop putting out misinformation like this. As long as this goes on physicians will ignore people with ME/CFS and refuse to see them in clinics or do any research. The harm done to other people with the disease is immeasurable.

Is there any evidence of this happening? Because whew is this illegal and about as perfect a case of discriminatory punishment as it gets. Not that it would change anything now, but at some point when things shift someone is going to go through all of those and hit "delete all" on all of those so it would be nice to have and preserve them. It would go a long way towards making badly-needed punitive compensation.

People with illnesses should not be setting up facebook pages purporting to provide information that is just a re-hash of physician bullshit. And it is notable that the high profile people who do have these pages mostly do that.

We should not. But the professionals are explicitly refusing to do their job, in fact do an even more incompetent job, and this is what happens as a result. Honestly this is about as silly as a kid crying and wailing because his hand is stuck in a cookie jar, but all he would have to do is let go of the cookie.

The solution to this is to stop discriminating, to let go of the damn cookie. That puts a clear and total stop to both problems. Any physician exasperated by this has the solution in their hands, and it can only be directed above, at their professional culture and institutions, never below. In the meantime this is all just victim-blaming that puts zero responsibility on those with an actual legal (though clearly actually symbolic) responsibility.

Frankly it's in the same category as prosecuting someone for bleeding on a police officer's uniform, because the police officer beat them without a cause. It's so obviously wrong that most children will see through it without even thinking about it. The only reason it's accepted with us is because it's wildly popular to beat us down just for fun, but it doesn't change its blatantly illegal nature.

 

[rvallee]

This is a matter of war tactics. We are at war with a profession that is too dumb to understand what they are doing wrong.

Yes, but the medical profession is 100% hierarchically structured. Everyone who works in medicine is part of that hierarchy and system of checks and works as part of a whole. What one physician decides to do reflects on all, the profession is highly regulated and requires compliance with rules at all times.

We are millions of people with nothing in common other than facing the same illness. We have literally nothing in common, we are completely disorganized, certainly no more than people with red hair or fans of naked pottery-making are. This is not a war so much as a bunch of farm animals facing highly organized poachers. In a war analogy, it's a slaughter, based on perfidy.

We have no responsibility here. I'm pretty sure this is how most of the people failing us think. And they are wrong. There's nothing we can do about it, there isn't even anything strategic or tactical we can do. The entire premise of professionals is that you are supposed to be better than this. The fact that medicine is not is more like a judicial system where due process is just some inconvenience and prefers secret tribunals where everyone is guilty simply for having been sent there.

We should not have to do any better for this. None of this is our responsibility.

 

[Jonathan Edwards]

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.

The psychobabble is just fancy words for the prejudices ordinary people always had about those who claim to be sick but have nothing to show for it. To the man in the street, who is also the doctor in the clinic, the psychobabble stuff is 'obviously' right.

 

[Sly Saint]

Facebook group
The Nightingale Continuum
Wendy Boutilier

The group was afaik set up to continue the Nightingale Foundations and Dr Byron Hydes work.

https://www.s4me.info/threads/byron-hyde-md.41425/#post-634974

this is not just 'putting out misinformation' and is definitely not 'new'.

@Colleen Steckel might be able to explain more.

 

[rvallee]

You don’t need any expertise to know that BPS theories are bogus (although many people get the arguments wrong). But you do need expertise – or at least the intelligence, capacity and motivation to follow the science – in order to determine whether or not doctors and scientists are talking sense about biology.

And no one would need to do any of this if the fact that the psychosomatic models are bogus were accepted. The bogus models keep being promoted as effective, despite having been debunked. This is the main root cause, everything else derives from it.

Medicine is supposed to be based on science, is made entirely of professionals. And they refuse to acknowledge basic things like this. This is what creates all the other problems. There wouldn't be any babble at all if basic professionalism were a thing here. All of this is purely a response to a failed system, like people eating roots during a famine. Are people stupid for eating roots during a famine? From the perspective of someone forcing that famine and dining on turkey roasts, it might seem so, but it's not.

The responsibility to end this is entirely in the hands of those creating it. I can't fault anyone desperate for doing what they can here. This is entirely artificial hardship and misery, created and amplified by a highly-structured professional culture so powerful its opinions are legal evidence. The entire premise of being professionals is to be responsible. Even above training, responsibility is even more important.

This is a premise of the system, in fact the bogus models are literally promoted and amplified on the basis of this basic professionalism giving it credibility. There is no working with a system that says up is down when we need to go up, if that system simply chooses to not care which is which and punish anyone who goes the right/wrong way.

 

[Jonathan Edwards]

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?

Yes, but then that was the problem with missionaries in darkest Africa. I don't know whether I have seen anyone change their minds.

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 sort of enlightenment I do see - it was pretty much what happened to me.

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.

These people know very well that what they are putting out is criticised by ordinary sensible people like on S4ME. This is like climate change denial and anti-vaxx; it is almost as if scepticism feeds their beliefs. They like being seen as misunderstood by the establishment. Almost like Scientologists. But the hope has to be that somehow they can be marginalised by putting out stuff with a reliable basis.

 

[rvallee]

Agree with a lot said here. Also talk of ‘lived experience’ is increasingly common but particularly in groups who have been dismissed and frankly, have nothing else to cling on to.

And this is also the main message from the psychobabblers. The whole brain retraining and rehab scams are based on flimsy anecdotes. So clearly there is no actual objection for it within the medical profession. In fact, it's vigorously encouraged.

It's a great example of how two wrongs don't make a right, but the first wrong comes from the medical profession itself, despite there being a huge difference between simple accounts of illness experience vs "The Secret to curing this illness".

 

[Jonathan Edwards]

Is there any evidence of this happening?

Absolutely. Departments have policies of not seeing ME/CFS on their commissioning profiles. But they can always say someone else is supposed to do it. The letter proposing a ban on ME/CFS research is probably still on file but it will get forgotten as time goes by.

We have no responsibility here.

I disagree. I think every person with ME/CFS has a responsibility not to further harm others.

 

[Evergreen]

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?

Yep, that's what I was thinking too - some of us draft something, people who are interested can look at a draft, give comments, and we keep drafting till we're happy. Then depending on the topic, we show it to outsiders and see what they think, and keep going till it's as good as it gets.

Beyond S4ME, there may be a possibility of galvanising broad support around a more general idea of something like
"We are concerned that certain disagreements among health professionals and among patients - such as whether X is or is not comorbid with ME/CFS, or whether ME/CFS causes Y, or whether ME and CFS are separate conditions - are distracting from what we all agree on, and from what we need to do. So we (and here we list all organisations) commit to our priorities of
(a) raising money to fund research into...
(b) ...
(c) ..."

 

[Utsikt]

Yes, but then that was the problem with missionaries in darkest Africa. I don't know whether I have seen anyone change their minds.

Sure, but I suspect it takes far more conviction to become a missionary than to share something on SoMe. So the SoMe sharers might be easier to reason with, even though some are probably too far gone.

Maybe some targeted outreach to get them to engage more with S4ME could work, instead of criticism of their actions?

I think that if people start to get more of an understanding of how little they know about the actual research, they might become less comfortable sharing it uncritically.

 

[rvallee]

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.

One thing that is difficult here is that there is very little content to advocate with. Almost none, in fact. There hasn't been a single good news in decades. The overall picture is very bleak. The research landscape is even bleaker. Noting has improved at all. We can see the same thing in the news media, it's bleak as hell. Everything is terrible and completely stuck in place.

Most people who share stuff like this on social media do so because it's about the only content that isn't just about conveying how miserable it all is. If they stop sharing content like this, what else are they going to do that at least makes them feel like they're doing a small bit of good by advocating for a solution to this nightmare?

At the slightest hint of an actual good news it will all shift to this. But meanwhile this is a community where even fewer people than typical create content, and much fewer share anything. So the community is starved for anything that can advocate for a better life for us. We don't have enough content creators for this, and they can't be visible enough, so most random pwME will never see their stuff.

Of course the sad fact is that social media advocacy is pretty much pointless, because social media has fractured in isolated communities with no overlap to one another. The vast majority are just doing all of this on their own, without any input or encouragement from anyone else. There are no major organizations, the patient charities are tiny and most people will have never even heard of the, in part because in most countries there aren't any.

The entire process by which we are failed is through erasing us. We are made non-existent. It is said, out loud, by actual physicians, that no such thing even exists. Everything about us is denied, dismissed and buried deep. The only resistance to this is to keep talking, to keep showing up. And the best most can do is share flawed medical information made by physicians. Silence is not an option. Silence is slow death, which is exactly what the medical profession chooses to do to us, and this is a normal reaction to a very abnormal situation.

 

[Jonathan Edwards]

I think that if people start to get more of an understanding of how little they know about the actual research, they might become less comfortable sharing it uncritically.

Maybe, but that is not the history of how S4ME came into being - quite the opposite.

 

[rvallee]

Absolutely. Departments have policies of not seeing ME/CFS on their commissioning profiles. But they can always say someone else is supposed to do it. The letter proposing a ban on ME/CFS research is probably still on file but it will get forgotten as time goes by.

I mean specifically on the basis of sharing or bringing fact sheets or information about the biology of ME/CFS.

Because as far as I can tell, the discrimination against us is already total, on the basis that it doesn't even exist anyway, and it just makes no difference. Almost no one sees this stuff anyway.

But if there was something to it, it would be nice to see it. And preserve it.

I disagree. I think every person with ME/CFS has a responsibility not to further harm others.

That I can't agree on. The whole point of professionals is precisely to make that separation of who is responsible for what. But they aren't even accountable for spreading bullshit pseudoscience, so clearly it doesn't even rise to that most basic requirement. This is just abuse of power.

 

[Evergreen]

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.

The patients with other diseases have no need to! Most can go onto any decent health website and find good quality information about the physiology of their illness. There will still be unanswered parts, but they are a lot easier to live with if you're being taken seriously, supported and, crucially, in many cases, being treated with something moderately effective.

When all you're being treated to is an eye-roll, and finally a doctor or a bunch of doctors say/write "This is what's wrong with you" and cite some research, it's natural that many or most people believe that, at least at first. And for some people, it's natural to want to share that information, because they think they are helping others. Social media has blasted open that potential for sharing.

When we have an elevator pitch of the physiology of ME/CFS, the "embroidery" will fall away for all but the most dedicated embroiderers.

 

[Robert 1973]

Yes, but then that was the problem with missionaries in darkest Africa. I don't know whether I have seen anyone change their minds.

This reminds me a of a conversation on another thread:

A few years back I had a conversation with Robert Souhami, who most UK physicians have revered as one of the sharpest and most down to earth and common sensical teachers of his time. I grew up to believe that if you could not convince Bob that something was valid you needed to start again. Interestingly, I failed to convince him that my rituximab study design was valid and I proved him wrong. But the next time i met him the first thing he said was 'I was wrong.'

Bob asked me why there should be a category of ME/CFS - what justified separating off this group of patients? He could not see any reason to do so. So I wrote a Qeios article on the Concept of ME/CFS to try to answer him. I was arguing a case, which I think DecodeME now makes cast iron. There is a distinct biological category. If the sharpest minds in medicine can be persuaded of that, there is some hope that it will trickle down.

Apologies if this has been answered, but did Robert Souhami respond to your Qeios article? Do you think you’ve convinced him?

I don’t think you answered but I would be very interested to know.

 

[Adrian]

The meeting on Thursday was started with two people with ME/CFS or Long Covid talking about their years of 'lived experience' and how that should be treated equally as evidence with trials.

I'm pretty sure that Opal never said that (I will check with her). She was calling for more research and for researchers, patients and charities to collaborate to get more research going. PwME (including many here) are saying that they should be listened to but that is a very different thing. And lets face it if we had been listened to lots of bad research wouldn't have happened.

 

[Jonathan Edwards]

One thing that is difficult here is that there is very little content to advocate with. Almost none, in fact. There hasn't been a single good news in decades. The overall picture is very bleak. The research landscape is even bleaker. Noting has improved at all.

I would be more optimistic.
I see the reality that a group of studies, including DecodeME, the Precision Life studies, some studies done by people like Simon and Audrey and one or two other more peripheral things have given us quite a good overall picture of the disease. And that situation is very new, even if it is firming up what was becoming clear over a decade.

The causes of ME/CFS are
1. Genetic factors that include at least 8 known DNA domains that provide something like 10% of overall causation. (There are one or two studies giving a bigger percentage but this is looking a fairly good estimate.) The likely paths from these risk genes involve neural connections, pain pathways and innate immune cell activation, much as expected, but still to be pinned down in detail.
2. Infections act as time-point triggers and EBV is a major contributor. Covid-19 as well, at least if we consider ME/CFS-like Long Covid as under the ME/CFS umbrella. Risk genes overlap partly, which is as expected. It is not clear that infections actually contribute to lifetime causation because we all get these infections, but they probably do to some degree.
3. That almost certainly leaves a major part of causation, maybe as much as 80% as stochastic - suggesting, again not unexpectedly, that the disease pathways involve tripping a bistable regulatory mechanism that is sensitive to chance events (as for autoimmunity and of course cancer).

The exact signals that perpetuate disease are not known but we have some clear candidates and a lot of non-runners. DecodeME has not pointed to anything precisely but it has given clues and rare gene analysis/WGS has a very good chance of firming things up with a hit on one or two specific mediators. Further analysis of data already available and cross-comparison with other cohorts is also quite likely to throw up specific pointers. We are not done with the DecodeME data by any means.

The female predominance clue promises to be something that might lead to identifying specific pathways. People are already looking at this. We are also getting useful signs that male and female ME/CFS are very much the same disease, which has major implications because if there were two major causally different subtypes we would expect them to have different sex ratios and age of incidence patterns. That does not seem to be the case.

So ME/CFS probably is a virally triggerable neuroimmune disorder, but not because it has anything to do with the putative neuroimmune 'ME' of the 1950s. The broad structure of disease dynamics is shaping up in all sorts of ways. This is how you get to the answer. I know because I have been here before. It always seems slow but then suddenly you discover someone has put together ten bits of the jigsaw in another corner you weren't watching.

If only the MRC people would do a Rip van Winkle and wake up at last. But this can be done without them.

Now is the time to put out some information indicating that we are beginning to understand what is going on.

 

[Adrian]

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.

I think many doctors have prejudices and they notice things that support their prejudice and not those things that confirm their beliefs.

Educating doctors is a massive issue. I think educating researchers is probably something that would be good - to explain things like what ME is (what the symptoms are and why they are interesting - where there are interesting clues in the current research and why it would be a good area for them to get interested in (especially those in areas that the research suggests could be interesting).

I think trying to police patients is a huge mistake.