ME charities' response to the Reuters article

I'm happy to let Sharp say whatever he likes because he is heading for a major fall from grace. I know we all want it to happen now, but I think it will be interesting to see how quickly his " pet journalists" desert him when they realise that they've been duped.

In the meantime can I suggest people email insidehealth@bbc.co.uk
with program ideas. Don't mention PACE as they won't cover it. They could do a feature on the biobank

 

It is correct that he is not a salaried employee of the MEA.

But he is a member of the Board of Trustees.

He is accountable to the BOT which is accountable to the Membership. Members of the BOT are there to work on behalf of and in the best interests of the Association's Members - not represent themselves.

 

this was a good start:

https://www.youtube.com/watch?v=9O4nyEJi--s

we need more to follow on from that; who actually put the video together?

 

Feedback, so far, from the Twitterverse suggests that people think the charities got it wrong as well.
https://twitter.com/user/status/1108681882043117573

Click on the tweet to then see the responses.

 

I replace 'strange' with 'remarkable' and I think it's telling which quote of a particular regional charity's member Kelland chose to use.

But do the Daily Mail and the Times have really set a firm agenda on reporting on ME? Have they never talked to reliable spoekespersons of the larger ME charities?
And most of the time, except the known SMC characters, couldn't editors and journalists just be misled by the fact that quick information about good science and about sound critique and critics of ME research isn't found easily on the WWW? For someone new to the topic, the evidence presented by the "Trial by Error" blog articles might be overwhelming in any sense of the word.

Yes, I think the MEpedia https://www.me-pedia.org/wiki/Jonathan_Edwards page could be used as a template, but it would need substantial additions.

I always hesitate before I post suggestions regarding advocacy when I know that ATM I'm not able to substantially contribute myself to the work that would be implied. And it makes me sad that I am not able to do this kind of work as long as I haven't accomplished accomplish other tasks essential for my financial and a tiny remainder of my professional existence, which will need at least some months yet, maybe a year.

Regarding easy access to quick information about experts on ME research on the www, I just hoped that maybe some people discussing the chance to amend the Wikipedia page on ME (titled "CFS" by a stubborn wiki editor if I understood properly) may be interested in the idea to create additional pages on the most relevant persons involved in ME research.

A Wikipedia 'campaign' ;-) could include articles on other relevant persons of course, like @dave30th
(Just saw there is already a Wikipedia article on @JenB : https://en.wikipedia.org/wiki/Jennifer_Brea )

I'm aware that since the release of the Reuters farce most of us are struggling even more than usually. Take care of yourselves!

 

Yes. Its really difficult because the topic is soooo involved & complicated, & it's difficult to get anything like an accurate picture without at least 1 'long read' piece. I find it really difficult to know which article to link to when i'm trying to raise awareness.

I think that's partly why the CBT/GET fan club are able to succeed with such regularity in shaping public & establishment thinking despite the facts not supporting them, because the truth is just so 'unbelieveable' & takes such a rigorous 'looking into' of the literature to unearth. It takes a willingness to spend time digging through & reading & fact checking, which very few people have the time for even if inclined.

 

https://www.youtube.com/watch?v=oOk8SrZ-ufU

a 'remake' of this would be great

 

But we are made up of people.

What individuals who are part of #MEAction do IS what #MEAction is doing. We also work with other, larger organizations to make things happen more swiftly or more effectively, but in the end #MEAction's 'actions' are the actions of those who work there. There is no #MEAction beyond what the people who work there can do and are doing.

That's why volunteerism is so important, and that's why public support is so important. We are only as strong as what we can do together.

Beyond a letter of support, keeping people updated, and countering the newspapers and outlets who have uncritically carried this piece, we are also continuing to fight the 'long fight' with NICE, NIH, and CDC -- fights that will eventually make these kinds of events less and less likely as our successes pile up.

And they have been -- that's why this latest bevy of awfulness has been so strident.

 

He is setting the scene and building a narrative, with good advice in my view. He should have no interest in actual conversation. He should take excuses to leave an evidential trail of statements for his/their own career/PR/legal reasons. One message he must leave is that that understanding his work requires the capacity to read it i.e. detractors just were not capable of reading it closely enough. Forget the holes in facts - the waters just need to be muddied. He will have 2-4 ideas he must find excuses to repeat, all to frustrate risks against his credibility and increase sympathy (for the court of public opinion, litigation-viability assessments, for professional conduct processes, etc).

Another things I would advise Sharpe et al to do is to build an arsenal of patient stories that support their case:

BTW:

 

Firstly, I think all that ME Action and the ME Association are generally doing a fantastic job. Truly. The MEA response to Dr Potter's article was a huge mistake, but missteps are made by tired people, let alone volunteers with ME. I hope MEA does something to rectify that horrifically damaging conflation of "chronic fatigue" with ME/CFS by Potter. I would trust AfME 'as far as I could throw them' - any other sentiment will not be rationale for some time to come (hopefully they maintain decency and scientific relevancy to regain trust - and release large donor details).

Regarding the charities' PR response, the big problem is that nearly everyone is actually right in both directions. In short, I think it's a question of coordinating strategies and apportioning roles to them. The question then becomes one of which 1) priorities and therefore 2) which strategies and tactics meet them.

There are necessarily different strategic and tactical imperatives, each simultaneously correct, because they are operating in different streams with different immediate or accessible objectives. Pressures of NICE involvement vs advocacy is a dichotomy that both exists and can be disputed at the same time, for example.

I totally agree with people saying that Sharpe et al's approach is a sign of pwME and good scientists' success. But, I also believe that a person/agenda can deal you a deadly blow, even while they might be dying. For all the amazing progress made, for which I am eternally grateful, the bad agenda is still in control and future success is still ours to lose.

All this is far too easy for me to say, I know! I arrived some months ago here as a newbie, touched base with @EspeMor separately, kept telling you all I'd share strategic framework thoughts that I had, wrote things, disappeared, never finishing them cos of my health, etc. Maybe eventually, once I am better and ME is solved...

 

We were worried about these folks but they've been doing great work and publishing a series of useful articles over the past few years. I have been really relieved to see it.

There is great news coming out of the UK too. Can anyone here take on expanding what @wigglethemouse wrote into an article? I know we are ALL wiped out with this.

 

Before anyone thinks my sympathy for the charities means that I don't see the human damage of the recent articles, I have been badly hurt myself by these articles. Just a few days before the infamous articles, I exhausted myself, and ironically so.

I have a close family member, also extremely academic, with prejudices based on his irrelevant experiences of his psychosomatic neurological issues. This led to him preaching to my entire family about the 'psychosomatic ME' situation in which I find myself. This undid my work of educating and informing my family of the actual science. I then put in extreme effort to resolve his logical and methodological misconceptions, which was long and exhausting. His response was that I appeared 'angry', which I certainly became and have a right to be, given previous medical treatment. And then the Sharpe, Liddle, Porter articles came out a day or two after, undoing all my effort with him and my family again.

And that's without considering the world at large, which I look forward to reentering one day. I feel belittled and humiliated, also knowing I won't have the energy to reply in future work/social/neighbourhood/medical situations. Limitless energy to explain would be irrelevant anyway, because the patience of colleagues, friends, family, neighbours and doctors is finite. And these ignorant, narcissistic, sociopathic types such as Sharpe and Liddle have bookmarked themselves in the public consciousness, again.

Moan over! But the moan was context. I'd prefer to people to focus on my colder, albeit half-baked, analyses that I posted above.

 

Regarding video, I do have some ideas and dropped them in the #MEAction Slack. Here's my idea:

I'd like to interview people at the NIH conference and get an editor to splice that together. Young Investigator Workshop, too -- showing how many are ENTERING the field would be a nice counter to the BPS narrative that no one wants to work on people with ME. I have to see whether we have resources for that. We would need to hire a camera crew and devote staff time to the hire, the questions, the editing and post-production.

Other folks at #MEAction had ideas for videos, too. We've gotten footage from other conferences and discussions, so we might be able to 'work with what we have' to create a compelling video whether we get new footage or not.

Espe is right re: our capacity! People tend to donate to research (so do I!) but the fight is in getting larger organizations to recognize the need to fund the disease so anyone can apply for funding (and for reasonably-sized studies), not just a select few. And that's a job for advocacy. Plain and simple: we can't ever solve this disease without major funding from national organizations. The reality is that no private organization (besides perhaps the Gates Foundation or the Chan-Zuckerburg Foundation) could ever supply the kind of money necessary to fund research at a reasonable level, given disease-burden.

There are those who might say we never will get reasonable funding and it's naive to think we may. But stepping out of the fight is not an option. And it should go without saying that change can only be created by those who work towards it. Working towards it requires a belief in the possibility of change and the core certainty that society marches towards equity, even though there are setbacks.

I have reason to be hopeful because I've seen more progress than such setbacks. Four years ago, I never would have guessed that:

• The CDC would have removed GET and CBT from their recommendations
• Kaiser Permanente would have said its clinicians were mistaken about those therapies and have to do better
• Denmark would unanimously vote to move ME to neurological
• The budget at the NIH for ME would increase (yes, it's more complicated than that; don't get me wrong, I read Spotila's blogs with great interest & respect her conclusions)
• There would be research centers focusing on ME in the US
• There would be a successful UK Biobank gathering data on ME
• Basically every Ivy League University in the US with a medical school has a team working primarily on ME research
• There would be a yearly conference at Stanford
• There would be a conference at NIH just for ME
• #MillionsMissing would go from twelve cities to over a hundred in two years (I don't have a read, yet, on how many for this year but unless I miss my guess it will be even bigger)
• Unrest would win at Sundance and be received with such critical acclaim, spreading the word about ME so effectively that screenings would be held at medical schools
• That Unrest would be associated with clinical education
• Our Congressional efforts & influence would step up so dramatically -- more on that later

So change is happening. It's very painful, because BPS folk push back with how unreasonable, violent, and angry we are when we want to be treated equitably. But the tide is turning and they feel it.

I have no insider information as to what's happening there. However, I will say that when someone is behaving what appears to be irrationally, there are often reasons -- we're just not privy to them. I hope fervently that they speak up soon.

 

Why were you worried?

I have a lovely person from them coming out to me soon

 

Worried about them in what way?

They have a paper out soon and I already have agreed with them to do a video Q&A, not quite the same though I know.

 

Just because past is prologue! I was really glad to see them producing such good work.

 

Also, @Sly Saint thanks for the recs for videos to mine for clips!

[Edit: Does anyone else have any other suggestions?]

 

Fair enough and makes sense