Professor stops researching ME/CFS after intimidation (M. Sharpe)

includes a very unhelpful quote from CDC's E. Unger:

would be good to have the fullt text of her e-mail.

more on the series on this thread: https://www.s4me.info/threads/dutch-journalist-asks-about-pwmes-objection-to-cbt-get.5521/

(my last last post on this topic while having a forum break, I promise)

 

I've only read half ot the translated version, not a lot of tolerance this morning but I have a few comments on it so far.

Good riddance, if he shuts up.
Psychology is NOT science, psychologists are not scientists.
I suspected that video would come back to bite us.

I suspect it might make more sense, and suffer from less obvious hostility and irrationality, if google offered a Dutch to Martian translation option.

 

- Sharpe emphasizes that despite all criticism, his research has not yet been shaken. 'They've been trying to overthrow it since 2011, but it's still there.'

 

Professor flees crime scene with an excuse after he is exposed.

 

OMG - I can't believe, that at this point, we still have journalists churning out such mindless propaganda:

To write the above the journalist would have needed to go through the criticisms of the PACE trial, and then check to see that all the substantive points had been addressed by Sharpe. We can be confident that wasn't done, as we know that Sharpe fails to address the key substantive criticisms made by patients.

To suggest that people who want to know more about criticism of the PACE trial should read Sharpe's misrepresentations is pretty special.

It's a bit annoying that the icons of PACE criticisms they use are things I've pointed out problems with, like the ME Associations silly 'It's real! It's physical! It's ME!' t-shirts, or Myhil's PACE video self-promotion. These are not more important things than, for example, the false justifications given by the PACE researchers for making absurd changes to the SF36-PF criteria for recovery, seemingly post-hoc and without TSC approval. The De Monitor journalists seemed to want a nice simple story that would appeal to people's prejudices, rather than one that would require them to actually engage with the evidence.

 

Of course this, and any further research following on from it, will definitely have nothing to do with ME....

A European Research Agenda for Somatic Symptom Disorders, Bodily Distress Disorders, and Functional Disorders: Results of an Estimate-Talk-Estimate Delphi Expert Study, Published May 2018

Authors: Christina M. van der Feltz-Cornelis, Iman Elfeddali, Ursula Werneke, Ulrik F. Malt, Omer Van den Bergh, Rainer Schaefert, Willem J. Kop, Antonio Lobo, Michael Sharpe, Wolfgang Söllner, and Bernd Löwe

Highlighted here,
https://s4me.info/threads/updates-o...tion-and-terminology-systems.3912/#post-77912, alternatively open access at https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00151/full

 

PS: I'd already said this about the series:

https://www.s4me.info/threads/dutch...-pwmes-objection-to-cbt-get.5521/#post-100732

It's kind of amazing how all their work seems to indicate that they're aware that they're too lazy to take the time to really dig into the details and make an informed judgement about the research like PACE, but that they nonetheless think it's acceptable to make a series about the controversies surrounding the treatment of ME/CFS. I do not understand that mentality.

 

Well if going off to pick on the elderly with the same bullshit is a different field then he has opted for a different field.

Having said that this sounds like a Wessely, retired from CFS, comment and we have heard those countless times.

 

He's also getting himself involved with other vulnerable patient groups

Open access at https://hqlo.biomedcentral.com/articles/10.1186/s12955-018-0850-x

ETA: His ResearchGate profile is here, https://www.researchgate.net/profile/Michael_Sharpe2, if anybody else wants to view his towering scientific achievements.

 

A shame there does not seem to be comments facility for the original Durch article. Here, badly worded, are some of the points I would want to raise with the journalist and Prof Sharpe (also posted as a comment to Anil's blog post):

So sad that Sharpe is allowed continue to make these disingenuous comments.

This continued repetition of nasty irrational patients bullying the poor scientists was deliberately developed to devalue the criticisms by patient groups and patient scientists, and completely ignores the failure of PACE researchers to respond to valid criticism. It also ignores the large number of respected academics now raising the same points. The freedom of information tribunal in the UK, a legal court, found that the PACE investigators were unable to produce any evidence for this so called harrasment.

To suggest that David Tuller's robust language and repeated raising of the same issues amounts to bullying also overlooks the fact that his initial attempts to raise this have been ignored. It also overlooks that a growing number of respected academics, the majority of patient organisation from around the world and a number of British MPs are consigning his letters. It is only bullying if Tuller is saying things that are untrue or inaccurate and that the recipients of his letters/emails have actually responded in a reasonable and timely way.

There is growing evidence that exercise is contra indicated in ME, and a number of surveys indicate a significant number of patients suffer ill effects from GET, such that it is likely that if it was a drug it would have already been withdrawn. So accusations that giving GET to children is a form of medically sanction child abuse would seem totally reasonable. To fail to address these findings and assert that such accusations also are bullying to researchers is complete ethical cop out.

His assertion that patients object to PACE because we are afraid of the stigma of a psychological diagnosis is without evidence other than the assertion of the PACE appologists. Personally I would much rather have a psychological condition than have ME because then there are relevant treatments and a possibility of recovery.

He continues to assert that the use of CBT has no implications in relation to the causation of the condition, but conveniently skirts over the fact that the PACE version of CBT is based on the belief that ME is caused by false cognitions and aims to teach the patient that their understanding of their condition is deluded. This is not what most readers understand by CBT and to hide this is to seek to deliberately mislead. Personally I have had very productive CBT to help me accept the restrictions placed on me by my long term disabling condition, but unreservedly reject the PACE distortion of CBT.

He continues also to mis represent the many criticisms of PACE and fails to adequately respond to them. To say that patients prefer subjective evaluations in research is very convenient when the studies of CBT and GET using objective measures either found null results or failed to report them. However whatever the preference of experimental subjects this has no relevance to the fact that unblinded trials relying on subjective outcomes are uninterpretable, particularly when the interventions employed are designed to change how subjects regard their condition.

His assertion that decades of biomedical research have not identified a physiological mechanism is also disingenuous as it deliberately ignores the thousands of studies indicating biological abnormalities in people with the condition. We do not know the causes of many medical conditions including some dementias, but no one (rational) asserts that exercise and psychotherapy will 'cure' (existing) dementia.

Has he not considered the possibility that researchers are increasingly wary about engaging in psychological research into ME because the methodologies used are deeply flawed?

One can only hope that these rather desperate denials by Sharpe will alert a wider audience to the problems and encourage them to look more closely at what has been described as the most significant medical scandal of this century.

 

I find it worrying that someone who was happy using the CFQ is designing a scale (i assume with a random set of questions). Sharpe has no notion of what is necessary for a scale if he did he wouldn't have used the CFQ and certainly wouldn't have switched scoring schemes with the claim it 'gives more accuracy' with no evidence.

Of course maybe we should continue to pick holes in his research output even though it is not ME related

 

If someone sees exposure of the truth about them, and their effect on others, as intimidating, then that speaks volumes about them.

 

Here's the original tweet


and on Facebook

Code:

https://www.facebook.com/demonitor/posts/1832943500123561

if anybody wants somewhere to add comments to.

 

More like since his ME/CFS research got exposed as total crap he can't get any other sap to pay him more money to come up with more of the same. He will not be missed. Doubt he will stay out properly though.

 

Doesn't adding comments to things on social media just indicate 'interest' and hence mean that they come to be seen by more people? Could be worth having people post links to useful information, but it's probably a case where the fewer comments the better.

 

Ouch, what a read, adding one more one-sided and partial article in defense of PACE and Sharpe. I wonder: Where are the good investigative journalism and important questions? Why can’t journalists dig deep and properly? It would require investing resources and more than a superficial approach, but that seems to be an eternal obstacle. Really wish media/journalists understood that you can’t intuitively grasp the history and the essence of ME - do your homework and have another try.

One has to wonder - what is the purpose of this, - is it being a microphone stand for Mr. Sharpe? To quote Wessley. Nothing to see here, move along.

 

There are probably lots of PR people posing as journalists selling their industry out nowadays. That's how the SMC has got uncritical articles into the press over all these years.

Its just laughable that this same media machine is telling us its the internet etc whom are the perpetrators of fake news alongside the government and the establishment desperate to be the big brother of "real news."