Michael Sharpe skewered by @JohntheJack on Twitter

Biomarkers. When we have diagnostic and treatment biomarkers everything will change, including the disease definition and name.

We need ME in research because those are the tighter definitions.

Socially and politically its muddled, with problems and advantages with every label.

We will never get ME accepted as the common use label in the current social climate, though times change. We already have ME definitions dominating the better research.

CFS is particularly problematic given it leads to deep misunderstanding even in doctors.

So (hypothetically) suppose ME were caused by one kind of thing, and it was different attacks on muscarinic receptors. We might then wind up with Muscarinic Receptor Dysfunction Disease or something like that.

 

This actually happened to me! Got a new diagnosis (a rare periodic fever syndrome), for which there are (some) treatments. And I'm still here! To be fair, I'm not cured, not by any means. Still working through the treatment options.

So far, no-one has told me to leave cos I don't count as having ME any more.

I try to avoid saying "us" on the forum now, but it still sometimes slips out. You're still my "tribe".

 

I'm bewildered - do patients ever get to name their disease anyway?

 

I agree with the few out there who have expressed concerns in calling this disease by a symptom, as it puts emphasis on the symptom and sometimes doesn’t quite describe the experience of the patients bearing the burden of the disease.

I am one who stay away from decribing my disease as fatigue. I am not tired. And when I experience cognitive deficits, I can assure you this is not due to exercise intolerance or part of what we know as ‘post-exertional malaise’. Cognitive deficits is simply part of my illness.

I also know that there are different subsets within the disease defined as Canadian Consensus Criteria: Many will have major gut issues when I have minor one with the exception of my GERD which is currently well controlled. I do not suffer from drug or food sensitivity. My cognitive issues will be worse if I talk. So if I don’t talk I can spend time outside, or do activities that would be considered sedentary.

The issue of severity will surface at the same time as disease naming. Very severe, severe, moderate, mild. This is a stratification that can be quite muddeld. Some doctors have tried to untangle it, and as of late the length of time your feet touch the floor will determine whether you are severe or not. The thing is, with good luck, with pacing and adaptation to activities, with family support, with appropriate treatments (especially to address POTS) and with mobility devices, the same person who would be categorized as severe would actually be able to step out of their home and breathe some fresh air once in a while. i totally understand that there will be people on each end of the spectrum. i think the mildly affected deserve a voice too. They are the ones working full time and struggling.

I think that where we are at right now is still struggling (but winning) to get legitimate status as a disease with the medical community. We are barely getting out of the woods. Some days it simply feels we are still in the dark ages, where saying we have this disease (whatever you choose to name it) still means that you do not get medical care.

Anyways... I am rambling, I just read through a few pages to catch up with the thread. Thank you to everyone for bringing up the issues. They are important and everybody’s voice matter.

 

How about
Chronic Orthostatic Dysfunction, Chronic Hypersensitivity to Incoming Physical Stimuli and
Medically Unexplainable (So-far) Horrendous Yucky Post Exertional Agony Syndrome

 

Cod, chips and mushy peas? It must have taken you ages to come up with those!

 

Someone's hungry...

 

Another one of those BMJ Christmas specials?

 

Some while back in this thread we were discussing Godwin’s Law. I see Godwin wrote an article for the LA Times last week entitled “Godwin’s Law in the age of Trump”:
https://www.rstreet.org/2018/06/25/godwins-law-in-the-age-of-trump/

Meanwhile:
https://twitter.com/user/status/1013817348002807814

https://twitter.com/user/status/1013829536415350784

https://twitter.com/user/status/1013831813490462720

https://twitter.com/user/status/1013861505484443650

https://twitter.com/user/status/1014166476327092224

 

Continued from above...

https://twitter.com/user/status/1014297494136786944

https://twitter.com/user/status/1014487883749740544

https://twitter.com/user/status/1014531555275001856

https://twitter.com/user/status/1014538632277962753

https://twitter.com/user/status/1014879359465852928

 

...

https://twitter.com/user/status/1014538212092416000

https://twitter.com/user/status/1014539268302229504

https://twitter.com/user/status/1014549417360351233

 

I think using words like blame and culpable while discussing PACE makes the dialogue look like a witch hunt, undermines the argument and gives juicy tidbits for anyone farming for vexatious comments.

The point really is to avoid policy being made based on GET and CBT now and in the future by wrongly assuming it works...not attributing blame ...that’s not how science works...it’s not litigious and shouldn’t be compared to criminal acts. There is a whole long list of scientists that got it wrong in their careers. Note I’m being generous by including the sloppy practices seen in PACE as science as oppose to fortune telling etc. But it serves our purpose to assume they are trying to do science. This allows us to argue on the merits of their paper not reduce the argument to individuals and blame.

The often mentioned sneaky old boys network and their back room shenanigans with the DWP and insurance companies could possibly be exposed as corrupt for which harm to patients may have arisen, or possible money exchanging hands in a fraudulent way but that’s quite a different thing and would need specific evidence (not just from inferences from PACE itself). You then have the knotty issue of showing intent.

I think quality of paper and corruption need to be tackled separately and in that order rather than muddy the waters and dilute the arguments.

 

This, though I agree with the whole post. It's about priorities and pragmatism. We especially need to keep our eye on the ball with the NICE guideline review taking place in the UK.

 

I agree that the quality of PACE and undue influence need to be considered as separate issues but I think it may be naive to think they can be tackled separately in practice. It has become very clear that with organisations like NICE and Cochrane you do not get anywhere useful just by showing PACE was a poor study. Nothing changes. The other studies will do. The only reason why we are likely to see change is because various people, notabley David Tuller, have raised the issue of misconduct and people have realised that committees and authorships have to be purged of people with a vested interest (to quote Ilona Findlay) if any change is going to take place.

And at least some of the problems with PACE indicate at best a degree of incompetence that people running trials have a responsibility to recognise in themselves.

Science is actually full of nasty political interference these days. You cannot separate the two.

I am a bit disappointed to hear that Mike Godwin thinks that if consensus changes influences die away. How does he explain President trump then? The consensus is that he is a sexist crook. It is just that half of the US rather like having a sexist crook as king.

 

One of our problems is not that we don't have valid, strong arguments, we have too.many..... It's about choosing the right one at the right time.

I think the BPS politics will have to be addressed, or at least referenced, in the arguments against CBT, GET & IAPT. Otheriwse, if a biomarker is found for some of us, the rest will be left in a worse situation - the BPSers will try to use it as proof that those without the marker are the very people CBT & GET are designed for.

"They", BPSers, DWP, insurers used us as guinea pigs for proof of an idealogical concept that is resulting in MUS, FSS IAPT etc. This is why they are fighting so hard, if a small group of patients get a biomarker and wriggle out of their grasp there are plenty more fish in the sea. If we prove their concept was make believe and we undermine the BPSers ... We could take the whole edifice out. That's what they're scared of.

In that way, although I hate the trivialization that the name CFS has caused, I see an argument for it remaining. If the name ultimately disappears then it may make it easier for the BPSers to airbrush the scandal away. A perverse part of me would like to keep it, as a reminder of the harms that were done, of the callous disregard for human life and the quality of that life and how things must be different. The name is notorious, I'd quite like to take a leaf out of the BPSers book and twist the meaning. Make it notorious for the right reasons.

Please understand I am not in any way trying to minimize the untold harm the term CFS has caused every member of this community here.

Edited in a poor attempt at clarity.

 

@Invisible Woman , brilliant post!

 

I understand your cation but I disagree. Mike Godwin and I have had a long conversation on Twitter over several days/weeks, which led to him denouncing PACE and signing the open letter to The Lancet etc. In my earlier Tweets I made it clear to him that I have not made judgements about the reasons for the problems with PACE. Instead I have suggested that we need an independent inquiry in order to establish the truth (something Wessely agreed with).

In the more recent conversation above we are not only discussing PACE but all the issues faced by people with ME. “Culpability” does not imply criminality or misconduct. According to OED it means “responsibility for a fault or wrong”. Do I think there have been many faults and wrongs in ME treatment and research for the past 30 years? Yes. Do I think that it is importsnt to establish who is responsible for those faults in order to prevent them from being perpetuated? Yes. Do I think there have been multiple individual and institutional failures? Yes. Have I rushed to judgement on issues of corruption or misconduct? I hope not. I have only intended to suggest that it is important that those questions are answered.

Again, we are not just talking about PACE/CBT/GET. I agree (and stated in my earlier conversation with Mike) that the methodological problems with PACE are independent of questions about intent. But I’ve also made it clear that I believe it is important to establish why the problems have occurred. I’m not aware of having suggested or implied any criminality in any of my Tweets. It may be that many of the problems are due to incompetence and human error. However, I cannot accept that nobody has failed in their duty of care towards people with ME/CFS. I agree with Carol Manoghan that it is a “scandal”. And a scandal implies wrongdoing for which individuals and/or institutions must be held to account.

I agree. That is what I have been trying to do (within the limitations of Twitter and my cognitive problems). Mike Godwin has long since been persuaded that 2011 Lancet paper in PACE “is so profoundly flawed that it cannot be trusted”. Now I am trying to convince him of the need to investigate the wider issues and the reasons for the multiple failures.

Having said all this, I very much agree with you that one needs to be cautious about language and about making accusations of corruption, misconduct etc. If I have erred in anything I have tweeted, I apologise. However, I also think it is important that we do not allow ourselves to be silenced from raising legitimate concerns by the BPS smear tactics.