Michael Sharpe skewered by @JohntheJack on Twitter

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?
 
Keela Too said:
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?
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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.
 
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.

:mad:
 
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".

Most people, including many ME activists, conflate CFS and ME into CFS/ME
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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.
 


"
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"

"The population point prevalence of CFS is 0.1-0.9%, using restrictive (US)
criteria that exclude patients with psychiatric disorders, and 2.6% in primary care
using the Oxford criteria."

"
9.13 We emphasise the deleterious effects of unproven illness beliefs such as the
fear that any activity which causes an increase in fatigue is damaging - that ‘doing
too much’ causes permanent muscle damage and that CFS is irreversible or
untreatable.202 Research suggests that catastrophic or dysfunctional beliefs are
common in CFS patients and are related to disability.
203,204 Such inaccurate beliefs might fuel avoidance of activity, and then be
powerfully reinforced by the pain and fatigue which inevitably follow each
attempt to resume previous levels of activity."

"
9.23 We see no role for immunoglobulins, antihistamines or other immunotherapy.
There is no compelling evidence linking immune dysfunction with disability,224 and
no convincing evidence that any agent is effective.225-227 Antiviral agents are not
indicated.228 Experimental treatments such as immunotherapy should be given only
as part of controlled clinical trials. We see no role for vitamin or dietary supplementation"

"
We note positive evidence from well-planned trials and systematic reviews
supporting the use of antidepressants in such conditions as chronic pain,
premenstrual syndrome and fibromyalgia. We draw attention to the need for further
controlled clinical trials of antidepressants in non-depressed CFS patients before
making a recommendation."

"Whatever research is undertaken, the need for careful attention to methodology
is clear10 This includes the use of adequate case definitions, careful descriptions of
samples, the routine use of psychiatric screening instruments to allow stratification,
and the use of appropriate clinical outcome measures."

"
This report uses the term ‘CFS’ because there are recognised criteria for
definition. We urge others to do likewise. The term ME is widely used but not
precisely defined. We do not recommend use of this term in research or clinical
practice."

APPENDIX 1: Membership of the working group
Sir Richard Bayliss Consulting Physician, Westminister Hospital, London
Professor Leszek Borysiewicz Professor of Medicine, University of Wales College
of Medicine, Cardiff
Professor Robert Boyd Professor of Paediatrics, University of Manchester
Professor Francis Creed Professor of Community Psychiatry, University of Manchester
Dr Anthony David Reader in Neuropsychiatry, King’s College School of Medicine, London
Sir Anthony Dawson Consulting Physician, St Bartholomew’s Hospital, London
Professor Richard H T Edwards Professor of Medicine, University of Liverpool
Professor Elena Garralda, Professor of Child and Adolescent Psychiatry, St Mary’s Hospital Medical School, London
Mr John James Chief Executive, Kensington, Chelsea and Westminister Health Commissioning Agency
Dr Sean Lynch Senior Lecturer in Psychiatry, St James’s University Hospital,Leeds
Dr Anthony Pelosi Consultant Psychiatrist, Hairmyres Hospital, East Kilbride
Dr Tim Peto Consultant Physician in Infectious Diseases, John Radcliffe Hospital, Oxford
Dr Leone Ridsdale Senior Lecturer in General Practice, Guy’s & St Thomas’s
Medical and Dental School, London
Dr Margaret Thompson Consultant Child Psychiatrist, Southampton General Hospital
Dr Simon Wessely Reader in Psychological Medicine, King’s College School of Medicine, London
Dr Peter White Senior Lecturer in Psychiatry, St Bartholomew’s Hospital, London
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It is confusing. Most people, including many ME activists, conflate CFS and ME into CFS/ME.
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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.
 
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Keela Too said:
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 )

View attachment 3540

View attachment 3541

View attachment 3542

Edit to add link
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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.

"invitation to join the PACE trial a randomised controlled trial of treatments for chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis or myalgic encephalopathy (ME)"
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and

"Why are you asking me?

We have invited you to join our study because you have chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or myalgic encephalopathy (ME). In the rest of this leaflet we will be calling this condition CFS/ME for short."
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https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/trialinfo.pdf
 
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TiredSam said:
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.
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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".
 
Keela Too said:
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.
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exactly this
I was diagnosed by NHS with CFS I was diagnosed by a private specialist as having ME both on the basis of coming back with nothing showing as abnormal on the standard NHS blood tests and on my history - so would I be counted as ME or CFS?

Unless everyone in the UK with a CFS diagnosis is going to be seen by a competent non BPS ME specialist who is going to say who has what.

Until you've actually heard of post exertional malaise or exhaustion you dont know thats what it is. You might describe it as tiredness or having frequent flu like viral illnesses or whatever- thats what I thought. I go on other forums and people say they've been doing too much and now theyve got a virus and I say are you sure its not a flare up of ME/PEM often they say no. I think people dont want to accept that ME is causing them to feel so bad. The problem is a lot of people aren't properly informed about their illness because they havent got further than the NHS or maybe facebook groups.
 
NelliePledge said:
Until you've actually heard of post exertional malaise or exhaustion you dont know thats what it is. You might describe it as tiredness or having frequent flu like viral illnesses or whatever- thats what I thought. I go on other forums and people say they've been doing too much and now theyve got a virus and I say are you sure its not a flare up of ME/PEM often they say no. I think people dont want to accept that ME is causing them to feel so bad.
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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.
 
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