Special Report - Online activists are silencing us, scientists say Reuters March 2019

[fivetowns]

Anyone know how to archive tweets? I've already made a screenshot of Sharpe's tweet. I think it might be useful reference for any IPSO complaints people are planning.
The tweet has already changed as Kate Stein has deleted her replies to Sharpe.

Edit: Made a mess of embedding the tweet
Edit 2: Made a mess of embedding again so took the tweet out of my post. I think you probably know which tweet I was on about anywho.
Edit 3: Correct spelling mistake.

 

[rvallee]

Does he really believe this though?

I doubt it. He says it because it works, it's a political strategy. His and his colleagues' past efforts have painted us as irrational lunatics who can be ignored so they can basically say whatever they want and it will be taken at face value.

That works very well until it doesn't. With more and more academics and clinicians criticizing them, the shelf life has just about reached its end. Then it will be like turning on the lights on a disaster scene whose gory details were lost in the dark.

 

[rvallee]

MS caught lying.
(I do not necessarily agree with Leonid Schneider's tactic, but I think, as a non-patient, he has more leeway than any of us would)

Weak bluster. Sharpe does not want those claims tested in a court of law.

Not that a court of law would ever agree to decide on something like that anyway. Science does and its shows him to be wrong.

It's a really weird argument. I've seen a few times lately, that it was false that the 13% of patients who met the "recovery" threshold were not considered "recovered" because, well, they did not use that label (obviously, as arbitrarily lowering the threshold was done much later), which is not at all the claim. Always arguing a different point than has been presented.

 

[Cheshire]

 

[rvallee]

Or to have an entire issue of the Journal of Health Psychology devoted to telling you your entire career was a waste. Worst yet, not only were you wrong, but you've been harming people, which I can only imagine would be horrible to ever have to acknowledge if you're a health care provider.

They were all warned about it. Even Wessely does not understand that him being wrong for 30 years does not equate to 30 years of experience, that if people opposed his model from the start is that it started wrong, on false premises and assumptions. They can't exclaim surprise at the exact outcome they were warned about, including in numerous official proceedings, as others did around the world when pushing the same ideological model.

It makes me think about the poor guy who was killed by a doctor who chose to ignore the parents' warning that he was allergic to the medication. No surprise here, a choice was made to ignore warnings. But this example happened during an emergency. Here it was a cold-blooded, deliberate, systemic pursuit that decided to ignore thousands and thousands of similar warnings that their premises and assumptions ignored objective reality.

So they may act surprised, but in truth they can't be. And it's all on record.

 

[rvallee]

"Stop making these allegations or I will sue you."

(9 minutes later)

"I did not threaten to sue you."

Sometimes I wonder if Sharpe understands how words work - or perhaps he suffers from short-term memory loss.

I remember an exchange a few months/years ago with John. Sharpe replied to John asking for evidence and threatening to "test it in court". With John replying with the receipt, Sharpe walked it back. And it wasn't even an obscure thing, it was something Sharpe obviously knew was true and he was just testing whether he could swipe it away by threatening. It's his thing.

 

[Esther12]

Weak bluster. Sharpe does not want those claims tested in a court of law.

.

What does "rigging baseline" mean? I don't understand it.

 

[Three Chord Monty]

Thread:

 

[Three Chord Monty]

Is it me, or are these people becoming unglued before our very eyes?

Simon, however, remains cool as a cucumber:

 

[Barry]

If ME/CFS researchers are truly leaving the field, why does there appear to be so much more research happening now than in the past?

I suspect they are leaving the BPS-oriented ME/CFS research field, which doubtless sticks in the craws of those who have pushed it so hard, because helps reinforce how misguided such research is. It's almost as if they are in dog-in-a-manger mode, and if researchers are not being attracted to their BPS form of ME/CFS research then they try to discourage researchers from any ME/CFS research. It's derisible.

 

[Sly Saint]

"


Henrik Vogt @HenrikVogt

· Mar 15, 2019

Finally, @BMC Psychology - after months of undue delay - publishes @profmsharpe response to reanalysis of #PACEtrial "

but somehow omitted to publish Carolyn Wilshire and Tom Kindlons reply at the same time.
see post here:
https://www.s4me.info/threads/corre...rpe-goldsmith-chalder.8587/page-4#post-151783

 

[Jonathan Edwards]

I don't really follow your arguments, @rvallee.

All our experiences are in a sense mental and I do not see what experiences PWME have that can tell us whether the condition is due to a disturbance of brain function (mental) or something else.

The argument against CBT and GET has to be that the evidence for their effectiveness is not there. We cannot be sure whether any theory is right or wrong.

We cannot be sure that treating ME with radiation or organ removal is wrong either. If they worked then they would be justified. There is no reason to think they would work and I agree that there is no good reason to think CBT would work. But we have no reason to think any other 'physical' treatment would work at present because we don't know what is going on.

The problem as I see it is that so many advocacy efforts highlight the idea that this is a 'physical disease' rather than a mental one when we actually have no evidence to support that. Moreover they really bang on about it. My own thoughts about this is that from a medical point of view this distinction is pretty meaningless anyway. It would be entirely reasonable for the medical profession to ignore all the objections to PACE that it is based on the wrong theory on the grounds that the objections are confused and science does not work that way. Science goes for the theory supported by evidence, not the theory that looks right to start with.

 

[Hip]

Yes, including from Michael Sharpe (e.g. his letter to Carol Monaghan accusing her of conduct unbecoming of an M.P.). Perhaps in the interests of balance the reuters journalist could do an article on the abusive letter-writing campaigns of Michael Sharpe and colleagues. It's not like there's a shortage of material, so she won't have to worry about only having the occasional pathetic tweet to back her story up with this time.

That would be a far more interesting article.

Perhaps someone might start a new thread where we can compile instances of abuse or harassment perpetrated by the Wessely School and their supporters against biomedical researchers. Such a thread would be useful to send to journalists.



To begin such a thread, I was recently reminded of when David Jameson in a personal letter to Prof Malcolm Hooper threatened to report Hooper to his university or other authorities simply because Jameson disagreed with Hooper's biomedical view on ME/CFS.



There is also a good page on MEpedia on the harassment perpetrated by the Wessely School:
Intimidation and bullying of PACE trial critics

 

[Jonathan Edwards]

That’s astonishing - and you must see that it’s terribly unscientific. I mean, it’s not scientific to propose that after long and careful study 3 of the world’s most authoritative medical voices reached a unanimous conclusion about new biomedical research based on...pressure?

Sorry to Diane but this is just what I was talking about. There is nothing 'unscientific' about suggesting that 3 of the world's most authoritative medical voices reached a conclusion based on pressure. We are happily assuming that Cochrane, NICE, the MRC and up until now at least the NIH have reached conclusions based on pressure from the BPS lobby. If we are testing the hypothesis that authoritative bodies cave in to pressure we have pretty good corroborative evidence on the doorstep. Cochrane has recently imploded because of claims it is subject to pressure from pharma. The NHS is in ruins because it has succumbed to pressure from private financial interests. And on and on and on.

Science is about testing with evidence. Gundersen may have misjudged the evidence but he is right in principle.

 

[dave30th]

So, while I agree that these articles are infuriating and insulting, I believe that they should be taken as positive confirmation that we have grown as a movement, that we have made progress and that we should continue in our efforts.

Overall I agree with this. But partly I recognize that this could also be a US-centric view. Things have changed in the US and now it's key to keep up pressure and make sure the change continues in the right direction and speeds up and keep calling out the CDC and NIH for stupidity or too-slow movement or anti-public-health behavior and statements. I think it is good to remember that both the Times and even the Daily Mail (!) found the need to insert correctives, however modest, into the Reuters take. I could be wrong, but in the end this looks to me more like a speed bump or a flashing red light than a real set-back.

 

[Barry]

Excellent! Sounds like @Brian Hughes' book may be getting noticed.

 

[Hoopoe]

There is nothing 'unscientific' about suggesting that 3 of the world's most authoritative medical voices reached a conclusion based on pressure.

The turning point was the NAM report (the IOM is now the NAM).

The NAM report was commissioned in reponse to the CFSAC. The CFSAC existed to advise the HHS on CFS. I believe the CFSAC included a mix of scientists and patients.

This study was sponsored by the Office on Women's Health within HHS, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration, the Agency for Healthcare Research and Quality, and the Social Security Administration. The study was commissioned in response to a recommendation from HHS's Chronic Fatigue Syndrome Advisory Committee (CFSAC), which comprises 11 voting members, including the chair, who provide advice and recommendations to the Secretary of HHS on issues related to ME/CFS. Of the 11 members, 7 are required to be scientists with demonstrated expertise in ME/CFS biomedical research, and 4 should have expertise in health care delivery, private health care services or insurers, or voluntary organizations working with ME/CFS patients.1 In 2012, the CFSAC recommended that HHS “promptly convene … at least one stakeholders' (ME/CFS experts, patients, advocates) workshop in consultation with the CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.”2 Given the well-established and well-regarded consensus process used by the IOM, HHS contracted with the IOM in September 2013 to conduct this study.

In the weeks that followed, many advocates were greatly disappointed that HHS did not follow the CFSAC recommendation as it was intended. Patients, advocates, researchers, and clinicians expressed strong opposition to the study, arguing that the IOM lacks the expertise to develop clinical case definitions and that the inclusion of non-ME/CFS experts in this process would move the science backward. An open letter was sent to the Secretary of HHS, signed by 38 U.S.-based biomedical researchers and clinicians, declaring that consensus had been reached on the use of the Canadian clinical case definition (often called the Canadian Consensus Criteria [CCC]) for diagnosis of ME/CFS, and requesting that the IOM study be canceled and the funds used to support further ME/CFS research instead (see Chapter 3 for a discussion of current diagnostic criteria) (An Open Letter, 2013).

To me this looks like patients were being heard while communicating through the CFASC, while the NAM resisted patient pressure that arrived through other channels.

PS: yes there is pressure on these institutions but patients also have a right to be heard. When exactly does speaking to be heard turn into inappropriate pressure?

 

[Barry]

Also, I'm not sure that we are seeing true "placebo" effects here. The improvements can be explained almost entirely by therapist effects, helpful-patient effects, and most importantly, intervention education effects - in that the therapies were specifically designed to change how the outcome questionnaires were completed. Patients weren't simply feeling better because they were receiving therapy. They were being instructed to feel better. There is a big difference.

I think also that being fully unblinded, the participants would not just have been rating their own perceptions, but tacitly rating their therapists as well. So if the GET therapists were truly geed up about how good and beneficial their therapy was, participants would inevitably (even subconsciously) be rating it well.

Need to consider there is probably a very different therapist/patient relationship for behavioural remedies, compared to non-behavioural remedies. The behavioural remedy relies much more heavily on building a strong rapport with the patient (indeed I think the PACE therapist manuals allude to this), so the participant will come to have an almost friendly relationship with the therapist - it is actually part of the treatment. So it becomes harder for participants to 'mark down' their scores, knowing that in doing so they will be marking down their friend/therapist in the process; almost feeling disloyal in doing so.

 

[Jonathan Edwards]

PS: yes there is pressure on these institutions but patients also have a right to be heard. When exactly does speaking to be heard turn into inappropriate pressure?

I agree that 'pressure' is an entirely subjective concept here. All it really means is the opinion of those who have influence over a decision I guess. And I didn't say anything about patient pressure. How do we know the scientists at NAM are any more reliable than those on the 2007 NICE committee or at the MRC? The point is that we can never rely on 'because the important people say so' and science is never supposed to do that. We have to rely on the evidence and rational argument.

Everyone has a right to be heard but nobody has a right to expect their opinion to carry, unless it is based on evidence and reasoning. My impression of that report was that it made claims that were not very evidence-based and missed crucial arguments about the weakness of trial data. It served a political purpose in the US but as a counter to a BPS approach it was much weaker than it could have been.

 

[Snow Leopard]

No, in fact it is the difference between the active treatments that tells us if any of them actually work.
APT is what we call a 'matched control'. This is the best, and only necessary, form of control.

APT is not a "matched" control because it does not control for differences in biases. In APT the patients were basically trained to be very aware of their symptoms, whereas in CBT/GET, the patients were trained not to be as aware of their symptoms, and more optimistic in general. It's clear how this could lead to differences in questionnaire answering behaviour without actually reflecting differences in underlying health.

My impression is however that Quasar is being defended and excused by other pwME and now feels encouraged to add more vitriol and unproven accusations to their tweets. That shouldn't happen IMO.

Yes. Sigh...

Sadly, I don't think that is the case. The medical versus medical push in the UK in the early 2000s came from patient-based groups and patients and advocacy groups continue to push the idea. The UK Parliamentary debate hinged on the medical versus mental idea. The IOM report hinged on the medical versus mental idea. Forward ME have always focused on it. MEAction make use of it, as does IimE.

It is all a continuation of a debate that has existed for more than a century. Patients get dragged into it whether we like it or not.