Michael Sharpe skewered by @JohntheJack on Twitter

Yes. I'm getting the impression he is primarily interested in standing up for good science, and those who promote/encourage it, without fear or favour.

 

https://twitter.com/user/status/1014224713567145984


https://twitter.com/user/status/1014084815262568448

 

I’m not yet blocked, and got an interesting reply this morning. Screen shots as I’m not sure how to link via my phone. (Edit, sorry images seem huge, not sure how to sort that )







Edit to add link https://twitter.com/user/status/1014490160573100032

 

It would perhaps be good if PACE authors looked at their data again, and noticed that ME patients were dropping out more frequently (or something else indicating ME folk responded less well to their therapies than the fatigue cohorts) and so perhaps then they might get themselves out of this mess?

I suspect this might be their best option right now. It would mean a bit of humble pie, but perhaps not as bad as if they continue to declare GET/CBT as good ME treatment?

 

Could be useful but with the proviso that the anonymised data should be made available to other researchers, not just author approved ones, without shenanigans.

 

They are only different when you make up your own definition.

 

My own view is that CFS doesn’t exist in its own right.

There is CF which is a symptom and ME the disabling disease (where the inability to function is not generally fatigue related, but PEM related).

Then there is “CFS”, which is really CF, with “syndrome” added at the end to make it sound “real”, but which was probably created as a way to:
a) belittle the suffering caused by ME, and
b) ensure that lots of people who didn’t have ME were also give a CFS diagnosis

From here the two terms were actively linked, in order to obfuscate.

Now that it seems real harm is coming to those pesky ME types, it suits the BPS brigade to try and disentangle the mess that was created by that idiotic & demeaning CFS moniker.

 

My opinion is that CFS has become a brand and as a consequence it has become easy for doctors to dump everything under it so there are many underinvestigated and unkown diseases under it including ME.

When it comes to "CFS/ME" trials they just select people they think have the most potential to benefit from their chosen treatments, if that doesn't happen they just cook the books on the study then roll out their false conclusions for all "CFS".

It suits the medical system so it just continues.

 

If I may continue my paranoid ramblings from earlier (I do think the most likely explanation is that Sharpe wrote "by" instead of "but" - but since when did a more plausible explanation stop a good conspiracy theorist ...) it appears that Sharpe could try to sow discord amongst sufferers, divide and conquer and all that. So we have patient activists and real patients (both of which are whatever Sharpe decrees them to be according to which way he thinks the wind is blowing at the time of speaking, if he can be bothered to identify or define either group at all) and now CFS/ME is "confusing".

Well first of all, the only people who use "CFS/ME" are the BPS brigade, everyone else says ME/CFS, so he's given away the real conflators right there. But the point is, if he can get us all bickering about who's got ME and who's got CFS and are they the same and who are the real patients (and forums have been known to erupt into flame wars on exactly that topic), it can only be to his advantage.

And why does he choose to use the term "ME activist" instead of "CFS activist" or "CFS/ME activist"? Most confusing.

 

https://twitter.com/user/status/1014475596661960704


"
Chronic Fatigue Syndrome
Report of a joint working group of
the Royal Colleges of Physicians,
Psychiatrists, and General Practitioners
October 1996
"
It has been suggested that there is a wide group of disorders, which fall under
the term CFS, that are predominantly psychosocial, and a core called ME, which is
more severe, has a characteristic pattern of fatigability and is primarily of organic
origin. We do not agree."

"The term ME and similar terms are used to cover a wide variety of clinical and other complaints. They cannot be used for systematic research and may mislead patients into believing they have a serious and specific pathological process affecting their muscles and brain"

 

PDF copy of the report on MEpedia

http://me-pedia.org/images/7/71/1996_UK_Chronic_Fatigue_Syndrome_report.pdf

 

In case he hadn't noticed, so does the whole NHS!

But throughout this argument, he is being disingenuous. He is not answering the question. There is no doubt that the PACE trial also conflated CFS and ME. Such lax criteria can easily include both (all) because diagnosis is dependent on whatever the physician thinks is important, not what the patient does.

 

They do _not_ get to blame patients.....!! If he now wants to play the "ME and CFS are different"-card, then they activily lied to patients to get them to participate in the PACE-trial. Either way, it doesn't end up looking good.

and

https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/trialinfo.pdf

 

Absolutely. So if later commentary by MS suggests PACE participants were recruited under false pretences ... what then? @dave30th ?

 

Aye aye to that, @TiredSam

I agree that Oxford CFS is defined in the wrong way. Anyone who wants our disease to be psychological tends to want to highlight the fatigue part. The emphasis on fatigue is misleading and does PwMEs harm.

But this does not mean that those who meet Oxford criteria but not tighter CCC/ICC criteria have a different disease and can safely be given GET or CBT to cure it. And if you do make criticisms of PACE based on their definition of CFS, that is what you're effectively saying.

No, let's not leave anyone behind on the sinking PACE ship! No "us" and no "them".

 

Hear hear. CBT/GET didn’t show clinically meaningful outcomes for any cohort.

And the diagnosis any given patient is given seems to depend on the whim of the diagnosing medic rather than any widely accepted differentiation between names.

 

This.

What's worse, this blurring is often facilitated by the doctor. When I first got ill, I was sent to an internal medicine registrar for testing. When I described my symptoms, I never mentioned tiredness or fatigue, because that's not how it felt to me at all. I described feeling really ill, like I had a terrible flu, sometimes my heart would start thumping for no reason and I would feel like I was burning up. A lot of the time, I felt too ill to even sit up in bed.

Later, the registrar showed me he'd mentally inserted "fatigue" into my narrative "Now, you say you have fatigue, but that's a very nonspecific symptom, so its hard to know where to go with it". I protested, "no that's not what I said". His reply: "But you say you can't get out of bed a lot of the time, and isn't that the very definition of fatigue?". I was bolshy and hotheaded and did not accept this, but I'm sure lots of sweeter-natured people would just have just gone along with it, supposing they must have fatigue.