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

[Jonathan Edwards]

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.

That only applies to certain types of illness. We forget the extent of ignorance. And even if there is no need for other diseases that is still no explanation for ME/CFS.

And for some people, it's natural to want to share that information, because they think they are helping others.

What I see is not just sharing information but claiming authority for stuff you know nothing about and thinking you are helping others is not a justification if you are actually doing them harm. We all need to learn that at some point.

 

[Hoopoe]

I can often tell very quickly if a person understands ME/CFS or at least fatigue.

Immagine going to a professional to solve a problem and after 30 seconds understanding without any doubt that the other person has a false mental model of everything you just told them.

Inconceivable? No, as person with ME/CFS interacting with the healthcare system that is a common experience.

How is this level of incompetence and lack of insight possible? I don't know. Even if I make an effort to explain, it seems many just don't care about reality or results. The system is a machine that must keep going and follow its routine. That routine does not include anything for ME/CFS.

This is how patients trying to educate others about the illness are created.

 

[Jonathan Edwards]

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

I haven't seen Bob to ask. He stopped coming to Division seminars because he was fed up with people having slides full of vast amounts of unreadable data.

 

[Jonathan Edwards]

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.

Opal talked of lived experience. It was not her that made the point about its validity. But to be honest I don't remember what Opal said. Everyone at the meeting knew the importance of listening to patients - that is why we were there. The scientists from other disciplines I invited to listen in and did so assiduously are unlikely to have learnt anything from the patient advocate session.

It is time to focus on what matters.

 

[Jonathan Edwards]

I think trying to police patients is a huge mistake.

Nobody is talking of policing but if misguided patients are putting out stuff that contributes, however unintentionally, to deaths and children being taken into care people need to realise what is going on.

 

[Robert 1973]

I haven't seen Bob to ask. He stopped coming to Division seminars because he was fed up with people having slides full of vast amounts of unreadable data.

Could you email him, maybe with a covering note about the DecodeME data? His response could help to inform us what more we need to do to convince more doctors and scientists about the issues and to persuade them to get involved.

 

[Adrian]

Opal talked of lived experience. It was not her that made the point about its validity. But to be honest I don't remember what Opal said. Everyone at the meeting knew the importance of listening to patients - that is why we were there. The scientists from other disciplines I invited to listen in and did so assiduously are unlikely to have learnt anything from the patient advocate session.

It is time to focus on what matters.

So when you said

"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."

That was wrong.

 

[Adrian]

Nobody is talking of policing but if misguided patients are putting out stuff that contributes, however unintentionally, to deaths and children being taken into care people need to realise what is going on.

Patients saying things do not cause patient deaths and children being taking into care it is ignorant doctors who are doing this. I realize it is easy to blame patients for misinformed and prejudiced doctors who make decisions.

 

[Jonathan Edwards]

Could you email him, maybe with a covering note about the DecodeME data? His response could help to inform us what more we need to do to convince more doctors and scientists about the issues and to persuade them to get involved.

I don't have his email and I am not sure I would want to bother him at home. He must be about 85.

 

[Jonathan Edwards]

That was wrong.

Only if you are very pedantic about grammar. They both talked about lived experience and one talked about its level of validity. In fact I think we had a third person going on about 'lived experience' before we got started on the science.

 

[Jonathan Edwards]

Patients saying things do not cause patient deaths and children being taking into care it is ignorant doctors who are doing this.

I have good reason to think that is misleading. I am talking about contributing to the causation and I am pretty certain that is the case. There are networks of people passing these ideas around. We need to accept some uncomfortable truths if we are going to get anywhere.

 

[Trish]

I think trying to police patients is a huge mistake.

Does that apply to patient organisations too? And the patients they choose to represent them? I'm not sure where we should draw the line here.

I agree with not attacking individuals personally, but if patient organisations give publicity to patients who are spreading false or unscientific information, shouldn't we be free to criticise that information and ask the patient organisation to make it clear when someone is getting things wrong? I'm not referring to the examples on this thread as I didn't hear the talks of the patient speakers.

 

[Adrian]

Does that apply to patient organisations too? And the patients they choose to represent them? I'm not sure where we should draw the line here.

I agree with not attacking individuals personally, but if patient organisations give publicity to patients who are spreading false or unscientific information, shouldn't we be free to criticise that information and ask the patient organisation to make it clear when someone is getting things wrong? I'm not referring to the examples on this thread as I didn't hear the talks of the patient speakers.

There are lots of patient orgs including ones set up with one or two people. I do think we should be trying to help the main patient groups get things right. But there are ways to do that with positive engagement (i.e. think what are the best ways to influence a group).

 

[ME/CFS Science Blog]

Think it might help if people are outspoken about this on social media.

For example, regarding the 'ME is not CFS' debate, there is this sense that patient organisations and researchers conflate the two out of opportunism. And that the non-severe patients don't get the difference and are happy enough with ME/CFS.

So if more severe patients speak out about this, that they prefer ME/CFS rather than ME, that they don't think the ICC are superior compared to other criteria, etc, then this might be helpful for newcomers to understand the situation.

The 'ME is not ME/CFS' clique is probably a minority, but they talk about this constantly and aggressively.

 

[Adrian]

Only if you are very pedantic about grammar. They both talked about lived experience and one talked about its level of validity. In fact I think we had a third person going on about 'lived experience' before we got started on the science.

You did make an accusation about what two people said - you didn't say that it was an impression or interpretation you are making. So I'm not being pedantic.

I realize you feel there is no place for listening to patients in science and don't like that 'fashion' but I would point you to what Chris said in his talk.

 

[Utsikt]

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?

The road to hell is paved with good intentions, unfortunately.

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

I suspect it might be difficult to get through to any one person in a forum where scientific rigour and scepticism is the deviation from the norm.

Getting individuals to spend some time here where that is very much the norm might result in a higher conversion rate.

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.

I completely agree that this wouldn’t be an issue if the professionals did their job. And I don’t think anyone here disagrees with that. The ultimate responsibility and accountability should lie with them.

But other people not doing their job does not absolve others of their responsibilities.

 

[hotblack]

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.

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.

The new forum software has the ability to turn a thread into a more traditional blog article or website like view, which may be useful for this?

See this on article threads and or an example of displaying posts to highlight them here or this on featured content.

 

[Jonathan Edwards]

I realize you feel there is no place for listening to patients in science and don't like that 'fashion' but I would point you to what Chris said in his talk.

I think that is uncalled for Adrian.
As a medical scientist I based absolutely everything I did on listening to patients. They told me the nine clues that got me to the answer. But some patients do not appear to understand that it is not our job to listen to them for the sake of it. We listen and we ask questions because we want to gain information crucial to diagnosis, management and research. Much of what patients would like to talk about doesn't contribute to that. Most patients understand that very well and just want to provide what the doctor needs to know.

The 'lived experience' people seem to feel we should just sit and listen to their stories. There is a place for that in moral support but it has nothing to do with research. The problem with ME/CFS is not that clinicians have not listened. The problem is that they have misinterpreted what they heard. And the reason we did not have good research is not because we did not take the 'lived experience' as hard evidence. God forbid that we should use it as evidence of causal relation - which is always what is implied in these contexts. We need proper trials, not PACE on naltrexone with n=1.

The Showcase meeting was, I had thought, about bringing in new researchers, as you have always emphasised. It turns out that NIHR and MRC had no intention of telling anyone about it other than the usual ME/CFS cronies who wanted to feel they were being listened to. So we had standard NIHR mood music. If they had advertised it to invite young bright clinical academics along to see the hot research in ME/CFS and I was one of those I would have left to go and do some dictation in my office before Chris even got a chance to talk. It was pretty dreadful. The saving grace was that it was a very useful networking session for a few of us. I saw Simon and Audrey's new data. I go to know Danny Altmann, caught up with Jackie Cliff and Caroline Kingdon and had some useful conversations with Chris about data interpretation and mailing lists. And Sonya told us what was really happening - despite certain people in the audience. With luck the people I invited will be enthused on Wednesday when we have a brainstorm.

I try my best. And I am afraid I don't believe in mincing words.


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[Jonathan Edwards]

The new forum software has the ability to turn a thread into a more traditional blog article or website like view, which may be useful for this?

From what Trish says it sounds as if people are thinking about this anyway. I suspet there needs to be a website with a home page with links to popular questions that could guide readers to some of the myth antidotes.

Having a webpage with information is quite a shift in style though and if you provide information I think you should provide names of who is behind that information. I don't think it is simple, but I think it should be doable.

 

[Sasha]

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?"

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?

Sounds as though having a website front-end is in the pipeline but what Evergreen is suggesting sounds very much like a new factsheet which I would have thought could be knocked out quite quickly (by you, anyway!).

The letter proposing a ban on ME/CFS research is probably still on file but it will get forgotten as time goes by.

What letter? Is there really a ban?

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.

What do you have in mind?

Once your factsheet for health professionals is ready, I'm hoping that that will be a very clarifying and helpful set of information for PwME that we can disseminate widely - especially if charities take it up and spread it themselves.