'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

There are ME/CFS patients who have been sick for many years, sometimes decades. Some clinicians (Bell?) have suggested that a portion of these long-term patients have become over the years so used to their condition, so inured to the symptom cluster, that they actually imagine themselves as being well. It is only when they are able to compare capabilities with historic ones - not always easily done - that they realize their mistake.

My point is, do the BPS crowd offer a flip side to their false illness diagnosis? Are there BPS devotees that will treat false wellness beliefs? Is there a cure for us who only think we are healthy?

Geez, think of the $ windfall for the psychs who embrace that model.
 
inox said:
After Bastian already pointed him to her contact information. That's rude even 'in norwegian', as tact goes.
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I noticed that. She had already given him her email address several posts earlier, yet he then tells her to contact him. Why should she have to make the first move, over something he wants to discuss? That's rude, and lazy, no matter what part of the world one is in! :rofl::banghead:
 
EzzieD said:
I noticed that. She had already given him her email address several posts earlier, yet he then tells her to contact him. Why should she have to make the first move, over something he wants to discuss? That's rude, and lazy, no matter what part of the world one is in! :rofl::banghead:
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Yeah, guess I ment something along the line of - 'haven't got the insight into the finer details of UK academics powerplay - but even this blunt norwegian noticed that one' :-P
 
hinterland said:
Thanks for pointing this out.

I really appreciate this PACE participant sharing their experience, it would be great to hear from more in the patient community who volunteered for PACE.

This participant has explained that at the time of enrolement they were relatively treatment naive and their post-exertion malaise was relatively benign, such that they hadn't recognised a pattern to it. I expect this was the case for many who signed up to the PACE proposition of a 1:4 chance of graded exercise: that's worse odds than Russian roulette.

In other words, whether intentional or not, and without forcing patients to participate, these BPS studies recruit a self-selecting sample of patients that aren't necessarily representative of the wider ME/CFS population. It's not just severely affected housebound patients who aren't represented, but perhaps the vast majority of cases with the defining symptom of post exertion malaise.
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Exactiy, that’s what I find so frustrating. The way this is talked about in this debate which should not even be a debate, is false because the actual applicability of PACE to the general population which includes severe, entrenched, people with ME who feel exercise couldn’t help, people with comorbidities etc, is low. We hear 20% of people recovered and that figures highly challangeable due to their definition and changing measures half way through,, yet even in most generous estimations allowing that recovery figure to be true, when applied to the overall population I bet that would be reduced to 5%. Yet this study and its sisters is being allowed to be like some eclipse, completely overshadowing the field.

As someone said elsewhere about the deconditioning myth, this is being allowed to stand because of all those with vested interest who don’t wish things to change and the rest who don’t care enough to even think about it a bit, not because their case is so convincing.
 
I am trying to catch up. Trials do test hypotheses about causation. My trial of rituximab in RA was primarily designed to test the idea that B cells played an important role in RA. I think PACE would have been capable of refuting the model if recruitment had been tighter. The model was that continued poor functional potential was due to a negative view of that potential. CBT and GET seemed to induce a more positive view but there was no actual increase in function. That provides reasonably good evidence for the causal structure of the model being wrong.
 
It is interesting that Colquhoun has congratulated Bastian. I also tried to get him interested a couple of years ago. He said it was too complicated. I think he is wrong about ME being more than one condition in an important sense. There maybe many causes but there seems to be a central pattern of illness that is not just various forms of chronic fatigue. There may be other problems hiding unr the ME umbrella but that is not so unusual. Problems with watertight demarcation of who has an illness ar common and not a good reason to give up.

I had made the same mistake in the past. Maybe David is beginning to see that ME is a genuinely identifiable problem - or at least closer to being persuadable.
 
Snowdrop said:
It sounds to me like Sharpe is hoping to catch someone saying something he can pounce on and tweet the heck out of to deflect from actual reality.
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Much more likely that he wants to "warn" them about how truly dangerous and deranged we are and that we should not be trusted or even listened to.

Deflect, disparage, disinform. That's been the strategy for years and it works, but only in private. That works best with people who aren't familiar with the context so it's a gamble that can backfire. Truly desperate.
 
rvallee said:
Much more likely that he wants to "warn" them about how truly dangerous and deranged we are and that we should not be trusted or even listened to.

Deflect, disparage, disinform. That's been the strategy for years and it works, but only in private. That works best with people who aren't familiar with the context so it's a gamble that can backfire. Truly desperate.
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Well, we may find out in due course. I'm hoping the wool pulling will meet with more resistance this time round.
 
I think this blog by Bastian may be of huge significance.

Poor @dave30th still has to contend with being called a Mr Activist DPh. But Bastian cannot credibly be cast in this role - especially as she was a founder member of Cochrane. She is a card carrying member of the 'what's best for patients is good evidence' club. Amongst other subtexts, she is saying to her Cochrane friends - you are still getting this wrong.

All the 141 or so who signed letters might have been misled, deranged, clouded by emotion or whatever, but For Bastian that does not work. Her middle ground hard-nosed reasonableness continues to shine through her prose. She is not a climate change denier.

She has also opened the Pandora's box of the wider context and the implications for MUS.

I tend to limit my involvement to responding to requests or arguments raised in debate, because I am not by nature an activist. But I think the debate is now public enough to raise with medical colleagues as something that needs to be more widely understood. I have toyed with the idea before but this time I think I will put in a bid for a UCL Grand Round session, with enough question time to let all views be heard.
 
Jonathan Edwards said:
I think this blog by Bastian may be of huge significance.

Poor @dave30th still has to contend with being called a Mr Activist DPh. But Bastian cannot credibly be cast in this role - especially as she was a founder member of Cochrane. She is a card carrying member of the 'what's best for patients is good evidence' club. Amongst other subtexts, she is saying to her Cochrane friends - you are still getting this wrong.

All the 141 or so who signed letters might have been misled, deranged, clouded by emotion or whatever, but For Bastian that does not work. Her middle ground hard-nosed reasonableness continues to shine through her prose. She is not a climate change denier.

She has also opened the Pandora's box of the wider context and the implications for MUS.

I tend to limit my involvement to responding to requests or arguments raised in debate, because I am not by nature an activist. But I think the debate is now public enough to raise with medical colleagues as something that needs to be more widely understood. I have toyed with the idea before but this time I think I will put in a bid for a UCL Grand Round session, with enough question time to let all views be heard.
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So pleased to hear you say this. You have the " eminence" to correct the " evidence" and challenge the lazy thinking that pervades the higher echelons of the medical establishment.
 
Snowdrop said:
It sounds to me like Sharpe is hoping to catch someone saying something he can pounce on and tweet the heck out of to deflect from actual reality.
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I too worry about the sincerity of Prof Sharpe’s motives here. If I were a cynic I might say he was merely seeking to distract critics with bluster and misdirection, while hoping to sail the good ship PACE into the fog.
 
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