How would an Average pwME/carer (no biology knowledge or access to S4ME) be able to tell when a mechanism has been discovered vs bio “memes” and hype?

Yann04

Yann04

Senior Member (Voting Rights)
Just curious. I honestly don’t know what I’d do without this forum and it having pointed me to the few public people I can generally trust. (Like JE, Edinburgh team, Simon, ME/CFS Sceptic etc).

I don’t have the capacity to dive into bio studies deeply. And my carers don’t really understand the scepticism required. I really do wonder how people navigate this without S4ME. (Fully aware that in many cases they don’t and fall for a lot of the “memes” and hype).
 
Yann04 said:
I really do wonder how people navigate this without S4ME. (Fully aware that in many cases they don’t and fall for a lot of the “memes” and hype).
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I think pretty much everyone does fall for the hype, at least initially. I often encounter smart people who are signed up to all sorts of very poorly evidenced ideas about ME/CFS. (And of course, the media is full of people selling their latest book or their story about many unfounded ideas beyond ME/CFS too.)

I think with the passage of time, people with a more critical mindset come to realise that nothing much has worked, making the next thing that is promoted to them less likely to be the miracle cure. It's interesting that the parents and other carers of people with ME/CFS, and specialist clinicians too, often keep holding onto the hope of something working longer than the person with ME/CFS themselves. I think that might be partly because the person with ME/CFS knows exactly how rubbish they still feel, and how much effort each new 'cure' requires of them.

Beyond actually trying a treatment for themselves, it's really hard for a person to know if some 'knowledge' about ME/CFS is real. All the usually credible sources such as patient organisations, doctors and guidelines routinely fail us.
 
Excellent question @Yann04 and zi share the feelings about the value of S4ME. And excellent summary from @Hutan which I think describes a lot of my journey through going along with things to accepting the reality I knew earlier than those around me.

How will people know when the real deal arrives? It probably will take time to filter through. If more people start getting well, more medics get on board with that view of the disease and of course charities do their bit of publicity the knowledge will spread, media will pick it up. But I suspect many will not trust it, this is one reason I think medical professionals should be working on building better relationships with people with ME/CFS and rebuilding trust now.
 
This issue illustrates how let down we are by medicine.

On diagnosis how many people are told how little we know or understand about our condition, that the prognosis is uncertain but that the vast majority will never recover? How many are told there are no curative treatments, just symptom management? How many are given a clear understanding of what they need to know to have at least a partial understanding of the day to day variation: PEM, orthostatic issues, sensory hypersensitivities, food intolerances, etc?

Do people with other incurable conditions end up going through the every and anything treatments? With a back ground in a field allied to medicine and post graduate research experience I still ran the gamut of homeopathy, shiatsu, psychotherapy, special diets, etc.?

We are generally left to flounder in a sea of ignorance and misinformation. This leaves us prey to the misguided and to the charlatans. I think this is why such as Dr Myhill have such devoted followings. Though genuinely caring she goes well beyond the evidence and offers people certainty and concrete courses of action but all to little or no effect.

In the social forums there are many people with ME/CFS who believe the whole spectrum of the weird and wonderful; perhaps even such beliefs give them a comfort in that they have some sort of explanation. Even the charities do not always help, often sharing information on alternative approaches or implying that there are things out there that help some, so you just have to keep trying till you find out what works for you.

Though more is known about MND (ALS), what impresses me about the care provided is that here in the UK at least the MNDA gets to visit and support virtually everyone with the condition, ensures that they have good information and timely access to appropriate medical and practical support. As a consequence you see far less of the weird and wonderful, far less of the quack cures and predatory treatments.

(How do we ensure that everyone with ME/CFS has access to an intelligent and informed person who can answer our questions and support us accessing appropriate provision? Are there many intelligent and informed health care professionals out there?)

[edited final two sentences in the brackets]
 
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They will probably have many false positives. So even though they might be able to pick it up when something actually happens, they will also believe that they’ve found the thing when they clearly have not.
 
Hutan said:
Beyond actually trying a treatment for themselves
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I feel like people can “gaslight” themselves into thinking certain drugs/ supplements/lifestyle changes work for them when they actually don’t (without even needing to experience a coincidental improvment). I think I’ve even experienced that at the beginning of my illness.
 
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We're lucky to have a local Facebook group that doesn't allow discussion to drift too much beyond what's evidenced without a gentle but firm challenge. But it's only because it happens to have experienced mods, I'm sure there are other groups run by people who genuinely think they're helping, but really are falling prey to the hype.
 
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Kitty said:
We're lucky to have a local Facebook group that doesn't allow discussion to drift too much beyond what's evidenced without a gentle but firm challenge. But it's only because it happens to have experienced mods, I'm sure there are other groups run by people who genuinely think they're helping, but really are falling prey to the hype.
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I’d say 99% of groups.
 
This is a constant problem in my group. It was started in the first year of covid and most people in my group are covid long haulers, so mostly newer patients looking for a cure, blindly trusting every doctor who just mentions "chronic fatigue syndrome" and not many people who already tried everything without success. So I'm very much alone in this "battle" unfortunately.

My rules are quite strict (no alternative medicine at all, no promotion of cures/therapies/drugs, while strictly personal stories are allowed) but they are hard to enforce as sometimes I feel I am the only person in the group who cares about the actual science and evidence behind the various claims. People often take it as a personal attack when I remind them that they are making claims without scientific evidence and it takes up a lot of my energy to argue and tell them that such claims are against the group rules. A lot of newly ill people have a strong belief that it is possible to somehow at least achieve some improvement if you take the right supplements or whatever. A lot of people (probably naturally recovering) are convinced they have found the right vitamin/chiropractor, etc and are telling others to try. Or they see a shady paper about a single case study and see it as irrefutable evidence for a therapy. And they often see me as the bad guy who is "not accepting their help", "gave up", "is bitter and cruel" etc. (similarly to how S4ME is often seen as the bad guy when challenging unsupported claims).

I honestly don't always have the energy to do the kind of moderation when I explain things to people, it really takes a lot out of me. It is a lot and very hard to do with ME/CFS. I've been trying my best to not just be a simple ME/CFS group where everything goes but a group where the information posted is actually more or less reliable and supported by science (as far as it is possible with such a poorly researched disease). But it is hard because people are often getting their info from other, bigger (English or German) groups that are full of unsupported claims and not moderated so well or Cort Johnson with his million potential cures and recovery stories, or just random poorly written papers etc etc. And they see those sources as more established, even though I cite NICE itself to say there is zero scientific evidence for any vitamins or supplements for ME/CFS. It's like I'm talking to a wall.

It is hard work and currently I don't even see how it is possible to do it well without killing myself in the process. :D So I really understand why this question is important and I'm looking for the right answers to it myself.
 
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I think a mechanism alone might be difficult to communicate. An effective treatment would be a different story though. If for example dara p2 is successful and people start getting it off label and a significant proportion go into remission like the pilot, word would spread like wildfire.

And if the mechanism were discovered (or even strongly hinted at by findings) we would probably see recruitment happening for drug trials that target said mechanism. So they might hear about a trial recruiting based off of x mechanism.

But yeah a lot of pwME abandoned mainstream medicine entirely after being treated horrifically, or do not engage with doctors anymore. Outreach to them might be difficult - I'm not sure what the solution is there. To say nothing of the people languishing under a misdiagnosis of depression or FND or similar at home or in psychatric wards.

It will be a problem, definitely. I agree about the value of this place. I feel like I am on much more solid ground in my understanding since I started engaging here.
 
Wyva said:
I honestly don't always have the energy to do the kind of moderation when I explain things to people, it really takes a lot out of me. It is a lot and very hard to do with ME/CFS.
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It's a tough approach, but could you add a new pinned post explaining that messages not complying with the rules (with a link to them) are now going to be deleted—and the reason why?

It sounds as if you're explaining the same thing over and over, even though the information is already there for people to read. However much you want to be supportive and inclusive, that's not a reasonable ask of someone with ME/CFS.
 
Wyva said:
A lot of newly ill people have a strong belief that it is possible to somehow at least achieve some improvement if you take the right supplements or whatever. A lot of people (probably naturally recovering) are convinced they have found the right vitamin/chiropractor, etc and are telling others to try. Or they see a shady paper about a single case study and see it as irrefutable evidence for a therapy. And they often see me as the bad guy who is "not accepting their help", "gave up", "is bitter and cruel"
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Yeah. Definitely very common experience. People very much in the mindset of “individual problem to solve”.
 
Kitty said:
It's a tough approach, but could you add a new pinned post explaining that messages not complying with the rules (with a link to them) are now going to be deleted—and the reason why?

It sounds as if you're explaining the same thing over and over, even though the information is already there for people to read. However much you want to be supportive and inclusive, that's not a reasonable ask of someone with ME/CFS.
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I do delete posts and even ban repeat offenders from my group when they obviously break the rules. But very often things are not so clear-cut, especially with newer users who may be just naive and inexperienced. I need to cut people some slack, because as I said, my group is quite young, and most of the members are actually new to the disease as covid long haulers who often don't really know well what the deal with ME/CFS is. So it is "more work" in this respect than your average ME/CFS group with older members. Deleting and banning everything and everyone would be quite tyrannical at this point. :) I still delete posts quite often and remove people when I see it is a hopeless situation though.
 
Wyva said:
I do delete posts and even ban repeat offenders from my group when they obviously break the rules. But very often things are not so clear-cut, especially with newer users who may be just naive and inexperienced. I need to cut people some slack, because as I said, my group is quite young, and most of the members are actually new to the disease as covid long haulers who often don't really know well what the deal with ME/CFS is. So it is "more work" in this respect than your average ME/CFS group with older members. Deleting and banning everything and everyone would be quite tyrannical at this point. :) I still delete posts quite often and remove people when I see it is a hopeless situation though.
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It seems like it’s difficult for people to understand the nuances.

«This works for ME/CFS» is a completely different claim from «I did this and felt better afterwards», but so many people see them as equal.

Just even understanding what causality means and how it can be inferred seems to be a real challenge.

I don’t envy you having to be the sole mod in a large group..
 
Wyva said:
It is hard work and currently I don't even see how it is possible to do it well without killing myself in the process.
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I had been thinking of your experiences @Wyva throughout this thread, so was expecting you to comment at some point.

You have my sympathy, I must admit I have stopped following most of the ME Facebook pages I previously followed, that focused on people sharing their experiences as I found it so hard to respond constructively and non-confrontationally to many people with ‘idiosyncratic views’. Though occasionally it could be informative as in the dialogue between two people describing how useful they both found GET, in that when things were getting difficult they would do two weeks of GET to get back on track.
 
I found here after becoming fed up with the MEA on socials announcing a new study which shows that something something definitely breakthrough etc. never to be hear of again.
I would be no use in a cult or MLM, if you keep telling me the Wow Best Ever thing is happening and it keeps “not happening” I get cynical, bored and leave.
 
DigitalDrifter said:
I've not experienced this, can you give examples of what claims and where this happens? We're you talking about Reddit?
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There have been several examples, for example with some organizations (Doctors with ME is something I remember but there were probably more), sometimes researchers or people doing their PhD come to S4ME and take scientific criticism very badly, one example was a questionnaire recently developed with the support of the MEA I believe, sometimes people with a theory about ME/CFS come here, their theory or idea to do research gets challenged and then later you see them on Reddit calling S4ME "cult-like" or whatever. Or because discussion here often challenges diagnoses such as MCAS or POTS or HEDS and thus S4ME is seen as not a good source of info because they "don't believe" in these conditions.

There is also in general very little willingness from organizations etc to take some guidance about the science part from S4ME unfortunately.

However, I'm not really comfortable with speaking on behalf of S4ME as a forum, this was just something I said to illustrate that trying to promote good science, critical thinking and questioning and challenging claims is often not as easy as it seems, it is often not so welcome.
 
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