New PACE paper, more SMC spin.

[Research 1st]

My brain is very muddled, but I've done my best to find the quote of Vince saying CFS = PPS. I haven't been to sleep for over a day and have got stonking vertigo so will have to give it a few days break now, but anyway, here we go for clarity for the person who asked for the source of the CFS training video thing:

''Chronic fatigue syndrome and a lot of other conditions that we now class as persistent physical symptoms''.

''We look for a virus and can't see one''.

''We used to call them Medical Unexplained Symptoms and I don't think that's a very useful term''

Source:
Northern Association for Persistant Physical Symptoms.
My Health Skills
Video 6

Something to mull over...

Did 'we' (medical profession) used to call CFS, MUS?
Nope.

Do we not find viruses in CFS patients?
Yes. We find a lot of viruses. (HHV-6, EBV, Parvo, Enterovirus etc). We even find things like Bartonella, Lyme and Rickettsial infections.

''one of theories around it, is it's called physiological deconditioning''.

De-conditioing theory of CFS was around in the 1990's or there abouts.
It failed to demonstrate an explanation for CFS. I remember ages ago, papers were out on this, but it got dropped in favour of Pacing or CBT (can't remember which).

Fortunately the American biomedical findings of CFS is world's apart from 'Persistant Physical Symptoms'.

Unfortunately the UK 'research collaborative' is not what we thought (biomedical CFS research of various specialists coming together to share their findings).

What we need is subsets of ME and CFS, and the 'cause' can be split into the various sectors and people can get their health back, faster. At the moment we have severe grade patients trapped in psych wards, because the medics genuinely believe the 'evidence', that avoidance is why people are bed ridden, no underlying physical cause.

These poor patients (usually starting as teenagers) will likely end up with PTSD and have their lives ruined, even if a treatment is found. Ironic and very sad. That's what bothers me, what happens to the severe patients, the people in dark rooms who can't even get up to pee.

If I was a psych nurse, I'd have read all the headlines today in the Brit press, and had a lesser 'belief' in my patient as genuinely ill. It's only natural to read broadsheet newspapers (rather than the Daily Mail) and believe what you read is accurate. Perhaps we should look forward to a balanced news article in the Daily Sport readers wives section....

 

[Scarecrow]

My brain is very muddled, but I've done my best to find the quote of Vince saying CFS = PPS. I haven't been to sleep for over a day and have got stonking vertigo so will have to give it a few days break now, but anyway, here we go for clarity for the person who asked for the source of the CFS training video thing:

Thanks, Research 1st. I think you mean me although my concern was that Julia Newton's motives were being called into question for no good reason. There seemed to be a guilt by association allegation, which I thought was unfair. Hope you get some sleep soon.

 

[Anne]

I'm unable to read the thread, sorry, but can someone point me to the best link with a published response/comment?

I'd like one which non-ME-people would understand (to counteract what they are all reading in the news right now).

 

[Jonathan Edwards]

Something to mull over...

Did 'we' (medical profession) used to call CFS, MUS?
Nope.

Persistent physical symptoms is about as stupid a term as I can think of. Hopefully the medical profession will show no interest in it. I see that Guy's and Thomas's are keen, but nobody else much online.

I can see what it means 'Actually WE know what causes the symptoms but to say that would blow our cover and upset the patients because we think they are just silly people with false beliefs (oops!) so we will call its something boring that means nothing to them but everything to us.'

When will the psychiatry profession learn that communicating with patients does not occur in little patches called therapy sessions, outside which you can say what you like? Seems to me that playing poker with these people would earn one an awful lot of money since they do not seem to understand how not to give their hand away. It is the total lack of understanding of carer/patient relationship that I find so mind-boggling - and they are supposed to be experts in human nature!

 

[Scarecrow]

I'm unable to read the thread, sorry, but can someone point me to the best link with a published response/comment?

I'd like one which non-ME-people would understand (to counteract what they are all reading in the news right now).

http://forums.phoenixrising.me/inde...atigue-victims-suffer-fear-of-exercise.34936/

In case this link doesn't take you to the correct post, it's #14 by Wildcat.

 

[Anne]

http://forums.phoenixrising.me/inde...atigue-victims-suffer-fear-of-exercise.34936/

In case this link doesn't take you to the correct post, it's #14 by Wildcat.

Thanks, but I only find links to the bad articles (?) What I'm after is a good response, contradicting the media spin with clear facts and understandable for the general public. Maybe no such thing?

 

[Scarecrow]

@Anne
http://forums.phoenixrising.me/inde...alysis-of-pace-trial.34927/page-3#post-546203
The paper is discussed here. Probably a bit early for a published response.

 

[A.B.]

I can see what it means 'Actually WE know what causes the symptoms but to say that would blow our cover and upset the patients because we think they are just silly people with false beliefs (oops!) so we will call its something boring that means nothing to them but everything to us.'

It's easy to see what they really believe by the therapy they ultimately recommend (after saying whatever they believe the patient wants to hear, which they call negotiating a treatment). If patients have to be tricked and manipulated into therapy, maybe the therapy is just shit.

 

[chipmunk1]

Persistent physical symptoms is about as stupid a term as I can think of. Hopefully the medical profession will show no interest in it. I see that Guy's and Thomas's are keen, but nobody else much online.

I can see what it means 'Actually WE know what causes the symptoms but to say that would blow our cover and upset the patients because we think they are just silly people with false beliefs (oops!) so we will call its something boring that means nothing to them but everything to us.'

When will the psychiatry profession learn that communicating with patients does not occur in little patches called therapy sessions, outside which you can say what you like? Seems to me that playing poker with these people would earn one an awful lot of money since they do not seem to understand how not to give their hand away. It is the total lack of understanding of carer/patient relationship that I find so mind-boggling - and they are supposed to be experts in human nature!

it is also a question of medical ethics. even if they were right would it ever be acceptable to lie to patients about the nature of a treatment? I thought this is not how medicine works.

 

[Anne]

Sorry, I might not be expressing myself well.

I'm after something like these:

ME Association UK:
http://www.meassociation.org.uk/201...ng-to-its-avoidance-in-mecfs-14-january-2014/

ME Research UK:

50 Shades of Avoidance

The Lancet Psychiatry (!) has just published the latest analysis based on data gathered during the MRC-funded PACE trial (2011). This is the sixth sub-analysis in the series – others have dealt with cost-effectiveness, pain, ‘recovery’, adverse effects and statistical methods – but it is the most difficult to understand, as it deals with the ‘mechanisms’ that may underpin the effect of cognitive behavioural therapies (CBT) or graded exercise. Using very sophisticated statistical analysis, the researchers eventually conclude that ‘fear avoidance beliefs’ (that exercise will make symptoms worse) by the patient is a major factor in the success or otherwise of these therapies.

While this report may be fascinating to professional cognitive-behavioural theorists, the central fact remains – as the original PACE trial data showedhttp://bit.ly/1ybCQL1– that the effects of these psychosocial approaches are modest, benefiting only around 10 to 15% of ME/CFS patients over and above the benefit of standard medical care. The majority are not helped back to health using these techniques, a fact confirmed time and time again when ME charities survey their members. As the Editorial accompanying this study says, most patients do not recover after these interventions, and “quite a few patients do not profit at all”. Enough said.

The tragedy is that every time one of these sub-analyses of PACE trial data is published, a rash of media stories trumpet its arrival. Today, for instance, the Independent newspaper headlines the “benefits of exercise”http://ind.pn/1BZDniz, while the Daily Mail goes for, “victims suffer fear of exercise”http://dailym.ai/1IIC7AEand the Daily Telegraph “ME: fear of exercise”http://bit.ly/1sxh7dK. These stories are presumably based on the press release and run-off to satisfy the 24-hour news cycle, but they have little or no relevance to the real, lived experience of ME patients. We all know that ME patients are highly motivated to get well, and more than willing to do whatever activity or exercise is appropriate for their personal circumstances, from a short walk to sitting up in bed. The notion of ‘fear avoidance’ seems inappropriate and absurd in this context, however fascinating the concept may be to academic psychologists.

 

[Marco]

It is the total lack of understanding of carer/patient relationship that I find so mind-boggling - and they are supposed to be experts in human nature!

A few years back when certain researchers were running wholesale to the press with stories of 'death threats' from radical PWME I was thinking the same thing. If they really believed that we were suffering from a psychological condition and cared about our welfare, would it make any sense to then have us portrayed in the press as 'nutjobs' (no offense to people with psychological illnesses like myself).

 

[chipmunk1]

A few years back when certain researchers were running wholesale to the press with stories of 'death threats' from radical PWME I was thinking the same thing. If they really believed that we were suffering from a psychological condition and cared about our welfare, would it make any sense to then have us portrayed in the press as 'nutjobs' (no offense to people with psychological illnesses like myself).

this was probably more about controlling and managing difficult individuals rather than helping them.

 

[Snow Leopard]

A few years back when certain researchers were running wholesale to the press with stories of 'death threats' from radical PWME I was thinking the same thing. If they really believed that we were suffering from a psychological condition and cared about our welfare, would it make any sense to then have us portrayed in the press as 'nutjobs' (no offense to people with psychological illnesses like myself).

That quote of mine sounds like something I said, but I can't remember when I said it...

 

[Roy S]

Thanks, but I only find links to the bad articles (?) What I'm after is a good response, contradicting the media spin with clear facts and understandable for the general I public. Maybe no such thing?

Anne, this is the best I've seen in case you haven't seen it:
http://wwwnhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx

 

[Marco]

That quote of mine sounds like something I said, but I can't remember when I said it...

Sorry. Some how something I quoted from @Jonathan Edwards ended up being attributed to you. I must have edited and put the quote markers in the wrong place.

 

[Bob]

The fact that CBT failed to improve all five objective outcomes and GET failed to improve all five objective outcomes by a clinically significant amount, says it all. (They've even rebutted their own deconditioning theory, in the paper, because GET failed to improve fitness.) But even if I were to ignore all the flaws of the study (e.g. open-label, no placebo control, post-hoc primary outcome scales, post-hoc analyses, Oxford recruitment criteria etc.), and ignored the fact that the primary outcome response rate was less than a placebo response rate, and accepted their self-report primary outcomes at face value as a sign that some patients subjectively benefit from these treatments, there was still only an 11-15% response rate anyway (bizarrely the same as the net 'recovery' rate), so all this fuss that they're making in the media can (at the very best) only apply to a small minority of patients. The vast majority of ME/CFS patients simply don't respond to their treatments, and so any discussions re 'fear' being a mediator is irrelevant to the vast majority of the patient population. (Severely affected patients weren't even including in the study, so their ramblings definitely don't apply to them.) Not only that, but a large proportion of patients consistently report being harmed by GET.

On the other thread, I've posted a 2005 paper co-authored by White, that demonstrates that CFS patients without a co-morbid psychiatric condition don't have a phobia of activity: "The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia." From memory, the pace trial had a co-morbid psychiatric rate of 40%. And the PACE team haven't carried out a separate analysis for patients with and without a comorbid psychiatric condition in this latest paper. So that's a rigorous bit of methodology! Not. (Edit: Actually, I haven't read the paper in enough detail to know if there was a sub-analysis of patients with and without co-morbid conditions, so I've made a bit of an assumption here because I haven't seen it mentioned prominently in the paper.)

 

[Marco]

there was still only an 11-15% response rate anyway (bizarrely the same as the 'recovery' rate), so all this fuss that they're making in the media can (at the very best) only apply to small a minority of patients. The vast majority of ME/CFS patients simply don't respond to treatment, and so any discussions re fear being a mediator is irrelevant to the vast majority of the patient population.

And does it tally with the MRC's own belief that ME/CFS is heterogenous as stated in their 'Understanding the Mechanisms' call for proposals :

"CFS/ME is a complex, heterogeneous condition that comprises the interaction of different biological, physical and psychological mechanisms."

http://www.mrc.ac.uk/documents/pdf/cfsme-reviewer-guidance/

Not to mention some participants going of on a little flyer of their own doesn't exactly sound like the new collaborative approach we were promised.

 

[chipmunk1]

It's easy to see what they really believe by the therapy they ultimately recommend (after saying whatever they believe the patient wants to hear, which they call negotiating a treatment). If patients have to be tricked and manipulated into therapy, maybe the therapy is just shit.

When asked whether the illness was purely psychological, Professor Chalder said: “I think everything is in the brain.

I had to laugh when i read that. sorry.

 

[alex3619]

Do we not find viruses in CFS patients?
Yes. We find a lot of viruses. (HHV-6, EBV, Parvo, Enterovirus etc). We even find things like Bartonella, Lyme and Rickettsial infections.

The source of this issue is that no single virus is found in all patients (nor should we expect that I think ... there might be an unidentified viral infection but its not likely). Second, acute viral infections are not particularly common and so cannot be the cause.

Here is the fallacy though. Since no acute viral infection is known as a cause, no virus can be a cause. That is a leap of faith, not a rational claim. Different viruses might be causal in different patients. An unknown virus might be present, though this is looking less likely. Non-lytic active viruses, what used to be called latent viruses, could be a cause. Viral or other severe infection might trigger the immune or other changes leading to ME.

 

[alex3619]

it is also a question of medical ethics. even if they were right would it ever be acceptable to lie to patients about the nature of a treatment? I thought this is not how medicine works.

The problem with medical ethics and psychiatry is that what should be medical ethics, and moral, is frequently violated in psychiatry. Its OK to lie to mentally disturbed people, apparently. Its OK to force unproven hypothetical treatments on them. Its OK to deceive them into accepting unproven hypothetical treatments. They seem to be unaware that many patients and prospective patients are now medically literate enough to do their own investigation of the science and discover how very little is scientific. They seem to be unaware that hype and lying loses patient trust. Then they sometimes complain about lack of trust and blame the patients.