What can we reasonably expect of our patient charities in terms of disease management advice?

[Hutan]

I am interested in your views about what it is reasonable to expect of our patient charities in terms of the quality of medical and management advice they provide, on websites and information booklets, and by staff when they speak directly with the public.

An AI query tells me that patient charities should refer people to publicly available clinical guidelines and explain medical terminology. The problem of course is that most of the publicly available information about ME/CFS, even from governments or what should be highly credible sources like the Mayo Clinic, are rather rubbish at best, and dangerous in places.

The CDC pages on ME/CFS are pretty good, there is a little bit of a leaning too much towards pacing up and to the idea that treatments of symptoms can make a substantial difference. But, I think it's good enough - if a patient charity said no more than what is on the CDC in terms of ME/CFS management, I would be happy. The problem is that the CDC ME/CFS pages link to some truly awful resources, such as the IACFSME 2014 Clinical Primer. The NICE ME/CFS Guideline is ok-ish. The Science for ME resources are of course good but many influential people in the ME/CFS community have issues with the forum and we don't have many fact sheets yet.

If you were a trustee or board member of a patient charity, what would you be hoping to achieve in terms of the quality of advice given to patients and their families? What is actually realistic to try to achieve in the short term, bearing in mind that most staff and members (and even board members) are likely to believe what has been repeatedly put about by authoritative sources?

How do we get from the current situation of most patient charities having poor quality information to something better?

Do you have any ideas about how a patient charity board can retain the goodwill of its staff (who probably get a lot of job satisfaction from suggesting things that members can try to feel better) and its members as it moves to providing better information? How can a patient support charity compete for hearts, minds and donor funds if its story is that there are no cures, very limited symptom treatments, and many of the beliefs about co-morbidities are not supported by evidence?

Is there a risk that a patient charity moving to a more evidence-based stance will just drive its members and potential members to those charities who seem to offer more short-term hope and more support by being willing to provide advice on things like CCI and the use of a range of medications? On the other hand, is there a substantial legal, moral and reputational risk for organisations and the boards of organisations that continue to provide unevidenced advice?

Is it all such a minefield that most potential good board members are probably deciding that being involved with an ME/CFS patient charity is just way too hard and too risky?

 

[obeat]

I'm not sure we can significantly change the influencers, until we can create a coherent explanation of how neural signaling can explain the 200 different symptoms.


The obsession with lists of symptoms and categories, has meant that we don't focus on the overall PATTERN, which is crucial to understanding this illness.

 

[Kitty]

If you were a trustee or board member of a patient charity, what would you be hoping to achieve in terms of the quality of advice given to patients and their families?

First, do no harm.

Advice given on the NHS website for most conditions sounds trite for a reason: there's remarkably little sound evidence for anything. The only thing people offering medical advice can be sure of is that 20 years hence they'll be recommending the opposite.

How do we get from the current situation of most patient charities having poor quality information to something better?

Probably by continuing to do what we're doing, including the fact sheets? It would be great if someone from a charity would take part in the lengthy discussions involved—it's a very good illustration of how hard it is to frame the content with so little knowledge and when ME/CFS varies so much in severity—but I suspect some of them may be read on the QT anyway.

I think it will get through. Eventually.

Is there a risk that a patient charity moving to a more evidence-based stance will just drive its members and potential members to those charities who seem to offer more short-term hope and more support by being willing to provide advice on things like CCI and the use of a range of medications?

Yes. But that happens in every disease, and I'm not sure we can do anything to prevent it beyond sticking to the evidence.

Learning how to deal with being ill involves ditching most of what you thought you knew, and realising the motivations of people practising medicine aren't purer than everyone else's after all. We all had to do that before we got here, and some people probably never will.

 

[Nightsong]

Some really thought-provoking questions here. A few thoughts:

The CDC pages on ME/CFS are pretty good, there is a little bit of a leaning too much towards pacing up and to the idea that treatments of symptoms can make a substantial difference. But, I think it's good enough - if a patient charity said no more than what is on the CDC in terms of ME/CFS management, I would be happy. The problem is that the CDC ME/CFS pages link to some truly awful resources, such as the IACFSME 2014 Clinical Primer.

A charity could put out a document of their own that quotes liberally from the CDC patient-facing guidance, and that cherrypicks from the NICE guideline, couple it with some locally-focussed practical tips & suggestions, and produce something very good. None of them have, but I think it's possible to pluck out the best from the "official" sources and make it cohere into an excellent resource.

If you were a trustee or board member of a patient charity, what would you be hoping to achieve in terms of the quality of advice given to patients and their families?

First and foremost, that it not make patients worse or do harm. That it gives a realistic appraisal of what's known about the epidemiology and the natural history, neither inducing despair or unwarranted optimism for natural recovery in long-term patients. That it quotes the best of the best from the official advice that is out there, avoiding the oddities and compromises. Gently steering patients away from quackery, unevidenced modalities or tenuous links to disputed conditions, or hyping trivial or non-credible research. That it tailors advice to the local/national context in a way that makes it as easy as possible for patients to obtain what little support is out there and reduces friction with the world of medicine.

And to produce something, too, that medics will be happy to refer their patients to, even if they don't agree with it all. At present, in the UK, some patients are literally advised to stay away from support organisations by their doctors (GPs & ordinary physicians, not the small stratum of psychobehaviouralists). That really needs to change.

Do you have any ideas about how a patient charity board can retain the goodwill of its staff (who probably get a lot of job satisfaction from suggesting things that members can try to feel better) and its members as it moves to providing better information? How can a patient support charity compete for hearts, minds and donor funds if its story is that there are no cures, very limited symptom treatments, and many of the beliefs about co-morbidities are not supported by evidence?

They can help provide more practical advice and support. Benefits, housing, social care, advice for employers, advice for those in education - all carefully locally/nationally tailored. Every country has its own bureaucracy, often labyrinthine; patients can be helped to navigate it. They can also get involved in policy work, or in attempting to influence medical bodies, or in social media campaigns, or whatever is needed, and derive satisfaction from their work in those areas.

There are plenty of charities for illnesses that have no cure & limited treatments that are able to raise donations just fine.

Is there a risk that a patient charity moving to a more evidence-based stance will just drive its members and potential members to those charities who seem to offer more short-term hope and more support by being willing to provide advice on things like CCI and the use of a range of medications? On the other hand, is there a substantial legal, moral and reputational risk for organisations and the boards of organisations that continue to provide unevidenced advice?

In the UK the two main charities (AfME & MEA) have been around a long time; they have name recognition and some of the more subtle benefits that inhere in being long established. It's difficult to found an alternative to such long-established charities. I'm not sure about the position in other countries, although I think ANZMES has been around since the 1980s, so the situation may be similar in NZ. Are there smaller charities emerging that embrace the EDS-POTS-MCAS-CCI stuff?

The whole (pseudo-)CCI thing, if that is still going on, is a huge quagmire. If there are charity advisors giving advice that lands patients on a quack surgeon's operating table and those patients develop serious complications - or come to realise they've essentially been scammed - that strikes me as a serious legal risk.

If MEA updated their guidance to be more evidence-based I suspect the majority of patients would think "well, they know best" and go along with it. The number of patients that are both able (either by virtue of having relevant background or being sufficiently well self-taught, and not too severely limited by ME/CFS) & willing to engage in detailed analyses of charity-produced guidance seems minimal.

Is it all such a minefield that most potential good board members are probably deciding that being involved with an ME/CFS patient charity is just way too hard and too risky?

Has this happened, though? My supposition is that potential board members will usually be drawn from a small pool of people who have direct or indirect personal experience of ME/CFS, whether as a patient or carer or relative.

And, to put it in a bit of perspective, there are charities that work in some of the most deprived places on Earth. There are some that work in war zones, where there is a real risk of volunteers dying or sustaining serious injuries. Anyone who thinks ME/CFS is "too hard and too risky" probably isn't made of the right stuff anyway. We need people who are sufficiently robust to challenge existing power structures.

 

[Jonathan Edwards]

I think that a key issue is that there is no respectful treatment by health professionals. So charities feel they have to fill a void with 'Support'. That leads to over-egging ungrounded advice. I suspect the problem will continue until we have respectful care from the health professionals. Even if there is no treatment to offer, which applies to all sorts of things from dementia to emphysema, there needs to be an honest recognition of the reality of the disease.

 

[Hutan]

Terrific replies, thank you all.

 

[rvallee]

It's worth stepping back and asking about the general case: is it possible, has it ever happened, for an illness that is so thoroughly misrepresented in all official literature, sometimes to a shockingly fraudulent degree, and dismissed as a joke, at best, by the expert profession technically responsible for it, to achieve this? I can't say for sure, but I don't think it's ever happened. I don't think it's ever even come close to that.

There are charities out there dedicated to diseases with dozens of people affected who can reliably do better than all our charities combined, simply because they have the legitimacy we lack. In the end everything is about legitimacy, and it's built on belief. Belief is all that really matters. If people believe that an unsolvable problem is solvable, they will put in so much work they might actually get close enough to it that it's just as good.

On the other hand, when everyone in charge, and the public in general, has beliefs entirely aligned against even treating the problem as worth looking into at all, there is almost no amount of resources and effort that can make a difference. Belief is a multiplier or a divider. It can make the same investment go much longer and farther than it reasonably could, and it can pretty much make a large effort go entirely to waste, as we've seen in RECOVER.

I don't think much should be expected of charities. There is also a distorting effect from the UK, where the issue has been more elevated and the charities have gained some level of influence. In almost ever other country, there is either no such charity, or it's about on par with the smallest ME/CFS charity in the UK. The UK has by far the biggest and most impactful charity network dedicated to this illness in the world. Which is so damn bleak. Where I live the issue is completely nonexistent, erased as if it never even existed.

The charity sector cannot do better than experts. In most cases, this is what charities do: they bring the work of experts to the front and try to maximize its potential. Here, there is basically nothing to emphasize, even when it comes to research we can keep expectations at the lowest and still come out disappointed.

We see the exact same dynamics with governments. Every government has influential advisers, boards and individuals, medical experts who will assure them of wildly incorrect things with great confidence, being all trained the same way, with the same beliefs, and to think alike. It's not possible for governments to achieve anything in those conditions, and unlike some issues, like renewable energy, there are no market forces bypassing the gridlock at the top by providing a more profitable solution, so all the avenues for even minor incremental improvement are shut tight.

So, sadly, this is the very best that can be achieved in the circumstances. It's shockingly bad, but it's the cards we are dealing with. The fact that not only did Long Covid made no difference, things are actually worse off, is as big a clue we can get that it's nothing to do with us, with reality, with the facts, or anything like that. It's belief, the belief that such an illness is not possible, does not exist, and isn't worth paying attention to. This belief is everything.

 

[Trish]

Management advice needs to come in the context of a clear description of PEM and of severity levels with examples of management at each severity level. What makes sense to someone working part time with mild to moderate ME/CFS is largely irrelevant to someone house bound or bed bound.

Also by setting it out in the contex of the full range of severities, the reality of the importance of managing to try to minimise PEM becomes clearer, especially for new patients and families, clinicians and carers who may not realise how severe ME/CFS can get.

 

[wallfish]

How can a patient support charity compete for hearts, minds and donor funds if its story is that there are no cures, very limited symptom treatments, and many of the beliefs about co-morbidities are not supported by evidence?

Those elements make the story more powerful, no? I believe it just needs to be told well and be given an audience. The history and reality of our illness should easily conquer hearts and minds.

So, sadly, this is the very best that can be achieved in the circumstances

A lot of positive news articles coming from Germany recently, how did they reach this point?

Given the quality of resources from institutions, I see a role for this forum to make the state of research accessible for other organisations to syndicate.

 

[Utsikt]

The history and reality of our illness should easily conquer hearts and minds.

That’s not how the world works, unfortunately. But I do think a lot of the story telling could be better.

 

[wallfish]

Politicians and companies convince people with good stories all the time. The difference is only that ours is for a commendable cause. Tell a sad story (decades of suffering and maltreatment) or even better, an alarming one (it can happen to you or a loved one, too) and people are moved. Part of the story should be that something can be done about this (the illness is likely reversible) but decades of unfounded psychologisation have prevented cures from being developed and caused millions to suffer. Combine it with a clear ask or call to action, some creative talent (and a bunch of money, effort and influence), and we're well on our way.

Changing public perception from "feeling a bit tired all the time'' to something that better fits the most severe of us would have an immense impact, I believe. Just one episode of our public broadcaster's documentary series asking the right questions would do so much. There are so many of us patients. Many here are from a scientific background, but there must be documentary makers, influencers, media personalities, athletes, journalists, politicians... all around the world. People that are familiar with this stuff and have influence or talent. I speculate that lack of awareness of the scientific picture and the history, together with the isolation of patients are to blame for their influence not to have reached the public perception in my environment.

The current misconceptions are so widespread that only something big and organized can change them. I would even argue that these misconceptions are more likely to be changed by a good story than by the discovery of a cure for our disease.