ME charities' response to the Reuters article

I don't know enough about this to do it without doing research that I'm not at all able to do right now, I'm sorry. If anyone is interested in taking up the challenge here is the post from Wiggle and below I've quoted the full (but not extensive) list:

and

This is why I've changed to donating monthly to the running of our biggest charity, ME-foreningen, as well as enrolling every willing family member (the state will fund charities based on # of members, so it's a 2 for the price of 1 deal, more money and bigger influence as a bigger charity). They are really starting to have an impact and the growing numbers along with growing funds to hire people are a large part of that. Of course the changing climate for ME helps a lot, too.

I think in the UK the bigger issue is that people no longer trust the MEA or AfME, after a long history of dubious behavior and lack of transparency.

 

Maybe an exit strategy from 'ME'... before moving on to MUS/PPS/FND, where they'll have learnt from the past and be much more effective at manipulating people and covering up the problems with their approach.

[edited sentence] I don't see this as them accepting defeat, but as a part of them altering their postures and strengthening their positions by moving on from past problems.

 

I would say they're using the tactics they always have. They've been calling patients militant since they started studying the disease. I don't see anything new here, just an intensification of past efforts.

 

I think that joining, resourcing & suporting charities & volunteers is the step that we need to take.

There is no shortage of good ideas & strategies: the issue is resourcing & seeing them through.

Having a great idea or strategy is one thing. In lots of volunteer context the right next step to follow up is to say, and yes, I’ll be responsible for doing that and drawing a team together to make sure it happens. That is particularly tough when available time, energy & money is short.

We know that the people we are countering have all of the above and contacts aplenty.

Kicking David won’t defeat Goliath.

 

I've never heard this phrase but I really like it.

And yes, our issue is almost always that people have excellent ideas but we aren't a wealthy community financially or energy-wise, so they present them in hopes someone else will pick them up... or choose to spend energy on debate when they could be doing.

It means a lot of great things fall by the wayside or happen later than we intend. #MEAction has some healthies working for us and they're dynamos.

[Edit: off for the day, please don't be put off if I don't respond.]

 

That came from out of my head.
Can’t say it’s never been said before in human history, but seemed pithy and apt.

 

Sorry - I wasn't clear. [now edited post] The new postures I meant was about their move to PPS/FND/etc, rather than about their "don't look at the science, just look at mistreated patients being unpleasant to us" stuff.

 

As a member of the steering committee I think I am allowed to say that @JaimeS was not the only one to be worried. Keeping the UK ME Biobank show on the road has been very hard grind for those involved and a couple of years ago things looked quite bleak. Getting funding is always a nightmare. Fortunately, the quality of their approach and their tenacity has been rewarded. They have been in for the long haul and that is always risky but it was absolutely the right way to do things.

 

It is wonderful

The amazingly shocking thing is that it is NIH, i.e US, funded. And yet our 'under the influence' ministerial response to the last HoC debate refered to a lack of quality research applications. There is, of course, a difference between applying for MRC funding for a paper and for a going concern, such as a biobank i.e. I don't know who the state funding bodies in Whitehall, Edinburgh, Cardiff, Belfast would be.

 

Here is a link to the funding provided by the NIH each year to the UK ME/CFS biobank
https://projectreporter.nih.gov/project_info_history.cfm?aid=9272477&icde=31258613

And here is a list of 8 papers from the NIH project system that have come out from the Biobank
https://projectreporter.nih.gov/project_info_results.cfm?aid=9272477&icde=31258613

 

this

 

My apologies. I had intended to make the point that this is ammunition to throw back in the face of the government department and ministers themselves. this is because they rightly delegate via primary and secondary legislation, but they do retain overall authority and practical influence. In the case of the biobank, it seems to me that there is a question to be answered.

Who is it who continues our contact with the department?

 

if he were willing, I think (having heard him on the radio) that @JohnTheJack would make an excellent voice-over /narrator.

 

Obviously I wasn't clear, apologies. Where I refer to larger, singular actions I was meaning, essentially, that rather than trying to intervene on every individual 'bad' post that appeared, the community would have benefited from the charities posting about the situation, acknowledging what was going on, explaining the strategy that had been decided upon, and explicitly expressing support for the community. This would have been the larger, singular actions I would have liked to have seen.

I'm not so naive to think that the charities aren't busy, aren't trying to do more than they actually can with the workforce available to them, or don't actually do extremely valuable work in other areas, my point is that in this particular instance their agreed upon strategy had the unfortunate side effect of not offering visible support to the community at a time when it was needed the most.

 

I agree. It would have been good to have a joint statement by the ME/CFS charities. They could have focused on the good work they are doing with the biobank and supporting researchers, but that leaves some of the false claims by Reuters intact. Opponents might still think that psychosocial research is taboo in ME/CFS and that charities only support biomedical research. So personally I would like their statement to focus more on the bad research by the PACE-authors. They are the ones who have to defend themselves. They are the ones who made implausible claims (curing ME/CFS using GET/CBT) and cover-up mistakes in their research.

Here's an example of what I had in mind. I do not have the literary skills to write this down eloquently, but I think these are the arguments that should be made.


Hypothetical statement from ME/CFS charities:

As charities, we have dedicated our mission to the care and support of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS patients suffer from disabling symptoms that leave many unable to leave their homes or beds. Patients disappear from public life without anyone standing up for their plight. Currently, there is no treatment available for ME/CFS and doctors can only hope to relieve suffering by targeting each symptom individually.

Some researchers, however, have claimed to treat and even cure ME/CFS using graded exercise therapy (GET). This therapy instructs patients to gradually increase their activity levels and stop listening to symptoms as they progress. Unfortunately, we have seen many ME/CFS patients deteriorate because of GET. In multiple surveys, that go back twenty-five years and span various countries, patients have reported to have been harmed by this approach. GET consistently receives more adverse reactions than any other therapy we’ve surveyed including painkillers, sleep medication, antivirals, and antidepressants. We have received reports of harm by GET regardless if treatment was performed by professionals at specialist centers or not.

These patient reports have been corroborated by scientific study. The hallmark symptom of ME/CFS is no longer considered to be fatigue, but a marked symptom exacerbation after minimal exertion. In a 2015 landmark report, the National Academy of Medicine characterized ME/CFS as an “exertion intolerance disease”. When patients exceed their energy limit, they get much worse.

As knowledge of ME/CFS increased, the research that claimed to cure ME/CFS using graded exercise has received scrutiny. Unfortunately, this has not always been well received. Request to access data of GET-trials, were dismissed as “vexatious”. Those who demanded transparency were characterized as a “very damaging group of individuals”. And researchers and clinicians, who openly criticized these trials, have reported intimidation and attempts to silence their critique.

A court order was necessary for the release of the data from the largest GET-study; the infamous PACE-trial. Independent reanalysis showed that the PACE-authors had inflated their results threefold. Despite intensive exercise therapy, the walking speed of participants was less than half that achieved by class II chronic heart failure patients. Recovery thresholds for fatigue and physical functioning were so low that patients could deteriorate during the trial and still meet recovery thresholds on these outcomes.

Other GET-trials have similar faults. All of these trials are unblinded and rely on subjective outcomes. This means that both patients and clinicians know who is receiving the intervention and that treatment success is measured by how patients fill in questionnaires. As graded exercise instructs patients to stop catastrophizing their symptoms, it encourages participants to downgrade the intensity and frequency of their symptoms. This might lead to short-term improvements in how patients report their health, but these disappear at follow-up and are contradicted by objective outcomes such as exercise and fitness tests. So what changed seems to be the propensity of patients to fill in questionnaire optimistically, not their clinical status.

Medical institutions all over the world have since changed their guidelines on ME/CFS. In the US, the Centers for Disease Control and Prevention (CDC) have removed their recommendation for GET while NICE is currently reviewing their ME/CFS guideline in the UK. Such developments might have embarrassed proponents of graded exercise. If research is shown to be flawed, this can damage the professional reputation of the authors. This is not due to a smear campaign by scientific journals or online trolling by activists, but due to much needed scientific scrutiny. For science to progress, it is vital that research can openly be criticized and disputed - no matter how embarrassed the authors might feel.

 

That seems a pretty reasonable statement @Michiel Tack. The only thing I would query is energy limit. It is not yet clear whether energy is really the limiting factor. Activity limit or tolerance limit would be fine though.

 

This

 

"A court order was necessary for the release of just some of the data from the largest GET-study'

and it's missing the charities explanation of their decision. I would also like to see a line or two of 'soft support' (a phrase I may have just made up). Perhaps along the lines of "While we will not otherwise be engaging with this article, we stand with the patients whose only desire is to reclaim the lives that have been taken from them by this destructive condition, that ruins careers, relationships, hopes and dreams of all ages. We see and feel your pain, you are not alone."

 

Perhaps would be good for S4ME to put out this kind of statement: idea originated & drafted here.