Prof Michael Sharpe of the PACE trial admits on twitter that ME & CFS should have been kept separate

[Countrygirl]

I am placing this very important exchange between Prof Michael Sharpe and a ME patient on here for evidence and for the record.

Prof Sharpe admits that ME is NOT CFS and that the two should have been kept separate. For all these years since the PACE trial was published he has allowed the NHS and other bodies to disseminate the misleading and harmful misinformation that ME and CFS are one and the same.

His silence has resulted in enormous harm being inflicted on so many.

I hope Dr Myhill forwards this tweet to the GMC to support her complaint.

 

[IThinkImTurningJapanese]

Study all you want, just stop wasting public funds. Especially with an illness where research is underfunded.

 

[Mary]

Study all you want, just stop wasting public funds. Especially with an illness where research is underfunded.

Ohh, and stop lying.

View attachment 27030

That tweet inspired me to join twitter so I could respond to prof Sharpe and thank him for impelling me to donate to David Tuller's crowd fund, which I did. I don't understand twitter at all and did send a tweet to Sharpe but beyond that I have no idea what's going on with it!

Also it was very gratifying to see tweets from a large number of people who likewise thanked Sharpe for the endorsement of David Tuller and who also made donations!

 

[nanonug]

Prof Sharpe admits that ME is NOT CFS and that the two should have been kept separate. For all these years since the PACE trial was published he has allowed the NHS and other bodies to disseminate the misleading and harmful misinformation that ME and CFS are one and the same.

No one knows what ME and CFS intrinsically are. A person exhibiting the symptomatology typically associated with ME is diagnosed in the US as having CFS. A person exhibiting the symptomatology typically associated with CFS is diagnosed in the UK as having ME.

The PACE trial was a failure not because someone "forgot" to distinguish the indistinguishable ME from CFS; the PACE trial was a failure because PACE was, and still is, bullshit.

 

[NotThisGuy]

maybe we should give it another retarded name like SEID to increase the confusion.

 

[Countrygirl]

No one knows what ME and CFS intrinsically are. A person exhibiting the symptomatology typically associated with ME is diagnosed in the US as having CFS. A person exhibiting the symptomatology typically associated with CFS is diagnosed in the UK as having ME.

The PACE trial was a failure not because someone "forgot" to distinguish the indistinguishable ME from CFS; the PACE trial was a failure because PACE was, and still is, bullshit.

The diagnostic guidelines for ME and CFS in the UK are very different. For ME, one has to have neurological abnormalities, which automatically excludes a CFS diagnosis. For those of us diagnosed years ago, we were diagnosed under the Ramsey guidelines, of course.

 

[Countrygirl]

The saga continues:

Replying to @profmsharpe @analoguefade and 3 others
How, then, did the results go on to inform NICE guidelines for CFS & ME? The latter having exercise intolerance as a defining symptom? (1/2)

7:54 PM - 27 Apr 2018 from Leeds, England

• 

New conversation

1. 1. 
      Hattie Hodgson-Crome‏@H_Hodgson 16h16 hours ago
      More
      Replying to @H_Hodgson @profmsharpe and 4 others
      Did you and the team not spot this potentially harmful conflation? (2/2)
      
      
      
   2. 
      michael sharpe‏@profmsharpe 14h14 hours ago
      More
      A complex question. Actually current NICE guidance were done before PACE was published. And I am just a researcher. I don't decide how they will use research next time and what definitions of illness.
      
      
   3. 
      
   4. 
      Hattie Hodgson-Crome‏@H_Hodgson 13h13 hours ago
      More
      Surely, if you see your work being misinterpreted (as with this conflation) with potentially harmful effects, you have a duty to speak out?
      
      
   5. 
      michael sharpe‏@profmsharpe 13h13 hours ago
      More
      My job is to write clear papers.
      
      
      
   6. 
      Sally Lambert‏@BookDreamerSal 8h8 hours ago
      More
      Whose responsibility is it then that your research isn't used in ways that you don't think it is suitable for? Do you think perhaps you should have worded things better to make it clear this was not to be used in patients with PEM and an ME diagnosis?
      
      0 replies0 retweets3 likes
      
      
      End of conversation

 

[SilverbladeTE]

The diagnostic guidelines for ME and CFS in the UK are very different. For ME, one has to have neurological abnormalities, which automatically excludes a CFS diagnosis. For those of us diagnosed years ago, we were diagnosed under the Ramsey guidelines, of course.

funnily enough it got changed to CFS on many patient's records including mine

 

[lilpink]

Further down Sharpe says he's 'just a researcher' - https://twitter.com/H_Hodgson/status/990061766251032576?ref_src=twsrc%5Etfw&ref_url=https%3A%2F%2Fs9e.github.io%2Fiframe%2Ftwitter.min.html%23990061766251032576

and that his 'job is to write clear papers'.


Except his job is rather more than this, or at least it has been in the past. In 2014 Michael Sharpe was named 'Psychiatrist of the Year' by the Royal College of Psychiatrists - https://www.psych.ox.ac.uk/news/winners-of-the-rcpsych-awards-2014-announced. https://www.psych.ox.ac.uk/news/prof-michael-sharpe-is-named-as-psychiatrist-of-the-year

This wasn't just for research, it was for integrating psychiatry into medicine, particularly by developing a psychological medicine service in Oxfordshire. Surely then he has a duty to speak out if his work is being misinterpreted and CFS and ME conflated, doesn't he?

 

[Deepwater]

funnily enough it got changed to CFS on many patient's records including mine

The two things have been treated as the same since Oxford criteria CFS was accepted as a thing by the U.K. authorities. They changed the name and the diagnostic criteria simultaneously, and ME got subsumed into this new larger diagnosis. As Prof Hooper phrased it, ‘How to make a disease disappear’. So it got changed on my notes too, and I guess everyone else’s as well.

It’s no good Sharpe now making out this was a careless mistake but I am interested that it could be a hint they are finally going to let go of the 1/4 of their chronically fatigued who actually have ME and carry on without us as the rest of the tired people aren’t so stroppy or supported by proper scientists.

 

[arboretum]

I mean CFS and ME are used differently and usually interchangeably in different places. What he means is what everyone has always known - that the PACE trial used a particular less stringent criteria (oxford) and not a more stringent one (Ramsey or others). ME and CFS or ME/CFS are often used interchangeably to refer to both criteria in different contexts.

 

[Diwi9]

CFS was and is an ambiguous political designation guised as a medical diagnosis. Yes, if you have ME, you fit the criteria for CFS. This is an effort by Sharpe to salvage the credibility of his research. It's a signal that the pressure of biological science is surpassing the political designation of CFS that purposefully subsumed ME. I will take the admission if it provides ground to acknowledge that we are chronically ill with a biological condition that is not well understood and needs more research before "evidence-based" treatment plans are implemented.

 

[alex3619]

funnily enough it got changed to CFS on many patient's records including mine

This happened to me in my hospital intake form in Australia. I wrote ME, and it came out CFS. However its possible that in some cases this is due to computers overwriting names. Other times its clearly staff, including doctors.

 

[alex3619]

Yes, if you have ME, you fit the criteria for CFS.

Nearly but not always. A well managed mild ME patient, with good pacing skills, might not have chronic fatigue.

 

[Rossy191276]

There was a discussion some months ago where quite a few people who meet icc and ccc criteria reported not meeting Fukuda or oxford. I am severe bed bound for last 18 months and I just looked at Fukuda and I don’t meet 4 criteria. I have memory/concentration issues, severe pem, and unrefreshing sleep but not a 4th. I think quite a % of those who meet icc and ccc don’t meet these if they are in the large subset that seem to stop getting normal illnesses with ME...

 

[Rick Sanchez]

I actually hate this trail of thought.

It makes it appear as if some patients in PACE actually had some sort of benefit from CBT or GET.

When the fact of the matter is that despite the absurly broad criteria of entry, they couldn't prove that CBT or GET was beneficial to ANYONE in the study.

 

[Deepwater]

I actually hate this trail of thought.

It makes it appear as if some patients in PACE actually had some sort of benefit from CBT or GET.

When the fact of the matter is that despite the absurly broad criteria of entry, they couldn't prove that CBT or GET was beneficial to ANYONE in the study.

I hate it too, although it might be good news for us, because ut’s Just a damage limitation ploy to keep hold of as many of their victims - sorry, patients - as they can, which is a gross misuse of public money and continues to encourage idle diagnosis of people who may have serious conditions.
Actually, I seem to recall that either Sharpe or White has admitted before that they were only studying Oxford CFS, not people who met international criteria for ME, but no policy changes have occurred as a result of this admission because our doctors/ medical notes don’t distinguish either.

On Sharpe’s own assessment they actually helped 1in7 of their disparate patient cohort, but of course even that’s open to question as it was all on self report.

 

[Diwi9]

Nearly but not always. A well managed mild ME patient, with good pacing skills, might not have chronic fatigue.

True, there are no absolutes with this illness, but the definition was created with loose criteria to consume and morph ME into something much broader.

 

[lilpink]

It's worth following this thread on Michael Sharpe's Twitter page - really 'landing some punches' now to Sharpe AND the UK Government

https://twitter.com/i/web/status/989488873834188806

 

[lilpink]

I said - really 'landing some punches' now to Sharpe AND the UK Government


Metaphorically/academically of course