Blog: "The Death Threat Myth Exposed", Jennie Spotila

Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. Vicky Whittemore said that there had been death threats against grant reviewers in the past, and that this was one reason why NIH is now withholding the names of reviewers on the ME/CFS Special Emphasis Panel (referred to as the “SEP”). This is not the first time that NIH has used the story of death threats to justify withholding the grant review rosters from the public. This excuse is overblown, and every repetition of it harms the ME/CFS community by perpetuating derogatory stereotypes of advocates and people with the disease.

http://occupyme.net/2021/04/06/the-death-threat-myth-exposed/

 

Someone seems to be lying. She worked with Wessely at the time. I wonder someone instigated her to deal with criticism from patients by making up a death threat story, or she received a call from someone pretending to be a reporter.

 

The irony.

Anecdotal report originating from one person of a potential threat made a decade ago and used since to block information that would normally be in the public domain.

The PACE trial, also now a decade old, used to shore up smaller studies that informed the NICE guidelines and have actually caused harm to hundreds, if not thousands of patients, since well before PACE.

 

BBC Article from 2011 entitled "Torrent of Abuse Hindering ME Research". The two interviewees are Simon Wesseley and Myra McClure.

https://www.bbc.co.uk/news/science-environment-14326514

 

I guess this is the reason the ME/CFS Special Emphasis Panel web page was removed (I think towards the end of last year).
https://public.csr.nih.gov/StudySections/IntegratedReviewGroups/IFCNIRG/CFS/Pages/default.aspx

All reference has been removed from the search panels too. The way to get to this broken link is via grant details.

 

Wow. I expected the claim to be overblown, but not amount to a single incident. That incident itself reading like cheap fanfic that at worst isn't even hearsay of death-threat.

@strategist https://www.bmj.com/content/340/bmj.c1099, the other propogator of the death threat narrative happened to coathor together about a year before this event.

Excellent blog.

 

Given the reaction by patient organisations years earlier in 2000 when they invited SW and MS to participate in a meeting about ME/CFS I imagine they already had a pretty fixed idea about pwME.

and Wessely repeats the narrative at every available occasion.
https://www.s4me.info/threads/who-is-simon-wessely.9364/page-20#post-335831

it is just bewildering that so few ever seem to question the issue.

thread on harassment claims here:
https://www.s4me.info/threads/the-harassment-campaign-references.661/

 

Interesting to read the origins of that. Seems there are things where those within science do not particularly care about accuracy. Whenever disputes are allowed to drift from exactly what was said and by whom then this will serve the interests of those who currently have power and influence inside institutions, and that ain't us.

It also shows how the actions of patients are still likely to be viewed through these old prejudices.

 

My take away from this reinforces that no matter the source ask for proof.

This certainly cuts both ways & I think this is something we as patients try to do as much as possible here on S4ME. It is one of the reasons why I avoid writing letters or engaging directly. My memory is not good enough and I haven't got the reserves to check and double check my facts. I am eternally grateful to the patients among us who manage this - it must come at a sacrifice of other things in their lives.

Scientists, doctors and researchers who simply accept statements that are put in front of them are in a different league, I feel. The have the health, cognitive capacity and are employed in a critical role. If they are as accepting as something like this as a fact then what else do they just accept?

It also puts me in mind of the huge price Alem Matthees personally paid on our collective behalf to access information that should have been fairly readily available. This acceptance of lack of transparency and hiding of data is all part of the same issue from where I'm standing.

 

What I found most interesting about that article is that Don Luckett of the Center for Scientific Review was quoted, from his own letter to a colleague, saying that he did check the source by ringing the paper:

The implication of that seems to be that they knew very well that what Dr Myra McClure had alleged was not correct, yet they kept quiet about it and allowed the false myth to be propagated. So they all just knew which way the politics of it were going and went along with it? And eventully they began to accept their own myth?

Also, I have access to some newspaper archives and had a look for that newspaper. It is the Lake County News-Sun based in Gurnee, Illinois, on the lake, part of the greater Chicago area, halfway between Chicago and Milwaukee. The paper is owned by the Chicago Tribune group and, while I don't have access to the archive of the News-Sun from that period, I could find no journalist of that name who contributed to the Tribune, or anywhere.

Edit: Spacing, italics.

 

Propagated by other people who didn't question. If they knew the facts could be checked that easily then they were relying on other people not questioning.

Which makes it look like there's a systemic problem of people not checking the most basic facts.

 

This story is yet another indication that the prime lead at NIH for ME/CFS is not willing to defend the image of ME/CFS within NIH. The disease stigma is still present within that institution.

 

A thought has been nagging at me since yesterday, that maybe despite being completely misrepresented, this may be one of the main reasons for why things are so broken. It's basically a universal formula that whenever the topic of ME comes up, most physicians immediately respond with something to the effect of "I'm not touching that with a 10-foot pole".

I've observed that for years and always found it super weird. But it makes sense if those physicians believe the claims here. Despite there being no actual claims, always vague innuendo that, when pressed, actually turns out to be official process and complaints, all perfectly valid and justified. Which should still change nothing. And yet it seems they may very well have.

So could it be true that an entire class of diseases affecting tens of millions have been entirely discriminated out of medicine largely resting on exaggerated anecdotes weaponized for exactly this purpose? I'd say the odds are looking very good that it is the case.

In which case: wow. This wouldn't be the biggest medical scandal of the 21st century but the biggest of them all and by a wide margin. All built on an actual Big Lie, devoid of actual substance and, even if true, completely irrelevant, as obviously there is no guilt by association for a population of millions, especially in a context of medical neglect leading to a massive human rights disaster. We have every right to be angry and obviously there is a wide difference between cursing people for harm they cause and actually resorting to violence, which has demonstrably never happened, otherwise it would have been used endlessly to beat us over with.

But without a credible investigation, it's basically impossible to overturn this. It would require evidence that the people responsible for this Big Lie can simply withhold or cherry-pick and exaggerate.

 

This is how I approach the subject with medics: The most "thorough" investigation into death threat allegations thus far, happened in the context of the PACE trial. During the QMUL FOI tribunal hearing, Trudie Chalder testified under oath that claims of death threats against researchers and participants were vastly exaggerated. Now, given that the reanalysis of the PACE trial, the most extensive piece of research into the efficacy of the BPS hypothesis thus far, showed that it was fatally flawed, what could've motivated the investigators to come up with these fabrications?

Could it possibly be that the extant body of research is of even lower quality, and that a refutation of the PACE trials results could make the entire BPS model of ME, that these researchers have built their careers on, come crashing down like a house of cards? And given that we know of at least one instance of them making threats up, what does that say about the prior probability of any other of these claims being mere fantasy? Why bother coming up with threats, if you already have ample, compelling evidence that these actually occurred in the past?

The problem is that reasoning believers out of their position is just about impossible when they have not reasoned their way into it, but rather bought into the cheap appeals to emotion that their colleagues fed them. As we have seen during the recent Ioannidis debacle, your sycophantic, grovelling friends will willingly jump to your defense, depending on how well you have treated them in the past, and Wessely plus friends are nothing if not slimy c- I mean, amicable and jovial personalities. Of course, Wessely's numerous accolades are also putting in their work here.

It's no wonder that the whole of academic and clinical medicine bought into their bullshit hook, line, and sinker, and we simply cannot make up for that, since we lack standing in their not-so-little tribe. We can't counter with our own appeals to emotion either, since, for these to be effective, it would require people believing our illness is real in the first place. ¯\_(ツ)_/¯

 

More lies exposed - with this story bring recycled dozens of times

https://me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_trial_critics

 

The article has now been updated with a comment from dr. Vicky Whittemore apologising and providing link with a list of the reviewers who participated in the recent ME/CFS CEP.

 

Yes.

 

only as it related to PACE. not in general