New PACE paper, more SMC spin.

[biophile]

What do the psychobabblers say about the phenomenon of PEM? Do they simply pretend it doesn't exist?

Valentijn basically covered it. The post-exertional symptoms are mainly attributed to DOMS or the "normal" effects of unaccustomed activity. In the therapy manuals, DOMS is also regarded as a sign of progress. The hypothesis is that patients initially avoid activity because of symptoms in general, then become deconditioned, then experience increased sense of effort and DOMS when they do too much, mis-attribute this as a sign of disease pathology or damage, then become fearful of activity, leading to a 'vicious' cycle of fear avoidance which maintains symptoms and disability.

The PACE results are dangerously presented to us as evidence that our "fear" is misplaced (if you can call it that) and is the most important factor to overcome for improvement, but as Sidereal said, the PACE results actually support the alternative hypothesis that there is a physiological activity ceiling which cannot be overcome by simply pushing through the symptoms.

IIRC, someone mentioned earlier on this thread or related thread, much criticism has been limited to case definitions. While there are other important factors to highlight, the importance of diagnosis should not be underestimated, since PACE:

- excluded 80% of candidates who had either a definite or provisional diagnosis of CFS,

- excluded severely affected patients and anyone with contraindications to exercise,

- 22% of the exclusions were because the candidate declined research assessment or randomisation, and the most commonly stated reason for refusing this was "a clear preference for a specific PACE trial treatment",

- did not appropriately use either the CDC criteria for CFS or the London criteria for ME,

- is no doubt an Oxford criteria study, which other definitions of ME or CFS regard as idiopathic chronic fatigue, not ME or CFS, and with the IOM/P2P efforts concluding that (research using) the Oxford criteria could be seriously flawed,

- did not require PEM or PENE from participants,

- did not adequately measure PEM or PENE, and did not report its association with outcomes.

 

[Scarecrow]

That is some intense caution... I didn't even know Deary was a Jewish name. Nothing to do with my thinking he's a dick!

I'm sure he is a dick! Doesn't make Newton one.

(I hope my previous post wasn't misunderstood. I may to have edit it.)

 

[Sean]

Once deconditioning is out of the picture, they don't have a lot left.

 

[Sean]

This so weak. We don't need apologists for our lack of activity. How about a statement that PACE is wrong and GET is harmful?

They should also include in that statement that their support for dropping actometers in PACE was scientifically and ethically wrong, and they deeply regret it.

 

[Bob]

Once deconditioning is out of the picture, they don't have a lot left.

Just fear, it seems!

 

[jimells]

Just fear, it seems!

Does their study compare the fear of being homeless to the fear of exercise?

Five years ago the fear of hypothermia motivated me to go dumpster-diving for scrap wood to burn. Fortunately the local outlet for surplus goods had a roll-off container used exclusively for broken items, damaged pallets, and similar debris.

I'd like to do a study on why psychobabblers insist ME is a psych illness. It sounds like maybe an OCD diagnosis. I'll have to look in the DSM to see which illness they qualify for. Of course I already have treatment plan in mind, so I'll have to sex up the study to make it match the desired treatment.

I was thinking they could start with Haldol in the morning and Thorazine at night.

Maybe they'll need additional treatment for paranoid delusions that ME terrorists are "after them"...

 

[Sean]

I'll have to look in the DSM to see which illness they qualify for.

With the proliferation of diagnoses in the latest DSM, you will be spoiled for choice!

 

[Sean]

Once deconditioning is out of the picture, they don't have a lot left.

Just fear, it seems!

They certainly scare the bejeesus out of me.

 

[Scarecrow]

FYI, I totally didn't understand it, Scarecrow! But with my brain, that doesn't necessarily mean much at the moment.

Oh, dear. Better try to explain myself then.

This all came about because Research 1st wrote:

It's confusing to me that Professor Newton is 'research collaborating' with people who say ME CFS is a biopsychosocial disorder. The mind boggles on this as an sensible career choice, as we know ME isn't psych CFS (F48.0) as they have physical disorders noted as part of the condition that exceeds F48.0 classification, e.g. POTS. Why 'collaborate' with people who deny, what you research (Muscle dysfunction in CFS) as existing? So very bizarre.

I don't espouse the views of some of my colleagues just because I work with them. I didn't choose to work with them. We were put together.

The only paper I can see with Newton's and Dreary's names on it is a sleep study - 'The role of sleep in Chronic Fatigue Syndrome'. Here are all the authors:

Zoe M Gotts(1), Vincent Deary(1), Julia Newton(2), Donna Van der Dussen(3), Pierre De Roy(3), Jason G Ellis(1)

(1) Northumbria Centre for Sleep Research, Department of Psychology, Northumbria University, Newcastle, UK
(2) Institute for Ageing and Health, Newcastle University, Newcastle, UK
(3) Fatigue Service, VermoeidheidCentrum Nederland bv, Lelystad, The Netherlands
Correspondence to Dr Jason G Ellis; Jason.ellis@northumbria.ac.uk

At the end of the paper it states:
Contributors JGE, ZMG, VD, JLN, PDR and DVD were involved in the design
of the study. PDR and DVD conducted the study and JGE and ZMG analysed
the data. The first draft was written by JGE, JLN, VD and ZMG and was edited
by all authors. All authors approved the final version of the manuscript.


The study was for Gotts's PhD. Ellis was her supervisor.

Zoe is a health researcher currently working in the Northumbria Centre for Sleep Research (NCSR) and a member of the Health in Action Research Group at Northumbria University. Zoe graduated from the University of Northumbria in 2008 with a BSc (Hons) in Psychology and then went on to complete an MSc in Psychological Research Methods in 2009, and completed her PhD in 2014 entitled "The role of sleep in Chronic Fatigue Syndrome".
Zoe’s research takes on a biopsychosocial perspective to examine sleep and wakefulness in Chronic Fatigue Syndrome (CFS). Her work integrates a range of objective, subjective and qualitative methods to assess sleep problems in an ambulatory setting. Zoe is also interested in the role of cortisol, including the diurnal profile and cortisol awakening response in this patient cohort. Her work will help to determine the (bio)psychosocial influences on the perpetuation and maintenance of symptoms in this unexplained and under-researched condition.
Zoe works with Professor Jason Ellis, Dr Vincent Deary, Professor Julia Newton and Dr Mark Wetherell and collaborates with Newcastle University, Newcastle Hospitals NHS Foundation Trust and the UK NIHR Biomedical Research Centre in Ageing. Her work is supported by Action for M.E and the ME Association, and she is actively involved in support groups for CFS in the North East and the Northern CFS/ME Clinical Network.

So it looks like Dreary and Newton are both advising a postgrad student and I'm (admittedly) guessing that they were 'put together'.

n.b. the bold's in the box are mine. Does anyone know why the second has brackets round the 'bio'?

 

[Bob]

Oh, dear. Better try to explain myself then.

Sorry, I didn't mean for you to have to explain yourself, Scarecrow, but thanks for doing so anyway, because I found it interesting.

 

[Snow Leopard]

LOL - they're going undercover on the spin. Looks like we're going to get less evidence of their media manipulation from now on.

Yeah, it's clear they had an 'oh shit' moment. After all the recent discussion about PR exaggeration.

 

[Snow Leopard]

There have been dozens of people who have sent him tweets. Sometimes they were directly after he made the tweets above, sometimes at other stages.

People can change their mind, especially those who claim to be evidence-focused. It would take some convincing though. (and probably not by a random patient whom he doesn't know).

 

[Valentijn]

And for folks like me that don't have muscle pain - just awful migraines instead - we're just making it up, I suppose...

Exactly ... they either have to be taking the piss or not listening to their patients at all in order to equate PEM with DOMS. Aside from "some (different) muscles hurt after activity", they really have nothing in common. And even with regards to the muscles, DOMS only affects the muscles used in the exercise, whereas we tend to get the full-body pain in muscles we didn't even use, as well as non-muscle pain, headaches, sore throat, etc.

But yeah, that's probably where their psychosomatic line of BS kicks in. So they say we get hysterical about the real pain AND imagine extra pain. And then we use the awesome powers of our mind to mess with our blood pressure for a couple days and make our lymph nodes swell up. Now if I only we could find a constructive use for our superhuman powers - like making their pointy heads explode

 

[Valentijn]

Action for M.E.'s response, for what it's worth:
http://www.actionforme.org.uk/get-informed/news/our-news/pace-trial-new-data-analysis-paper

They really don't get it. There isn't the slightest acknowledgement that PACE's conclusions cannot be valid when the methodology in obtaining those results was inherently flawed in pretty much every way.

AfME is not a charity for ME/CFS patients.

 

[A.B.]

The PACE results are dangerously presented to us as evidence that our "fear" is misplaced (if you can call it that) and is the most important factor to overcome for improvement, but as Sidereal said, the PACE results actually support the alternative hypothesis that there is a physiological activity ceiling which cannot be overcome by simply pushing through the symptoms.

I think it actually discredits their own model. There are four possible outcomes when testing their model:

1. Patient beliefs remain unchanged, and no objective improvement occurs. This means they failed to test their model.
2. Patient beliefs remain unchanged, but objective improvement occurs. This means that beliefs play no role, and that exercise is all that is needed to reverse the condition.
3. Patient beliefs change, and no objective improvement occurs. This means that the model is wrong, and that exercise doesn't reverse the condition.
4. Patient beliefs change, and objective improvement occurs. This validates their model.

I think outcome 3 describes the results best.

 

[user9876]

I think it actually discredits their own model. There are four possible outcomes when testing their model:

1. Patient beliefs remain unchanged, and no objective improvement occurs. This means they failed to test their model.
2. Patient beliefs remain unchanged, but objective improvement occurs. This means that beliefs play no role, and that exercise is all that is needed to reverse the condition.
3. Patient beliefs change, and no objective improvement occurs. This means that the model is wrong, and that exercise doesn't reverse the condition.
4. Patient beliefs change, and objective improvement occurs. This validates their model.

I think outcome 3 describes the results best.

I'm not sure that 4 actually validates their model. If there is a smallish objective improvement maybe it says their techniques can help manage a condition but their thesis is to provide a cure by changing patient beliefs.

 

[Cheshire]

I think it actually discredits their own model. There are four possible outcomes when testing their model:

1. Patient beliefs remain unchanged, and no objective improvement occurs. This means they failed to test their model.
2. Patient beliefs remain unchanged, but objective improvement occurs. This means that beliefs play no role, and that exercise is all that is needed to reverse the condition.
3. Patient beliefs change, and no objective improvement occurs. This means that the model is wrong, and that exercise doesn't reverse the condition.
4. Patient beliefs change, and objective improvement occurs. This validates their model.

I think outcome 3 describes the results best.

Great sum up.

The problem is they just focus on half the outcome:
1. Patient beliefs and behaviour remained unchanged. Failure
2. Patients beliefs and behaviour change. Total success!!! We are sooooo good. Shame some patients do not want to benefit from our awesome expertise...

 

[chipmunk1]

People can change their mind, especially those who claim to be evidence-focused.

They can. more likely if humble less likely if full of themselves.

 

[chipmunk1]

I was thinking they could start with Haldol in the morning and Thorazine at night.

i would guess someone following this regimen would no longer able to publish anything. With their logic that must mean if the haldol stopped the behaviour it must have been due to delusions which proves that they were delusional and which then justifies the treatment.

 

[MeSci]

Exactly.

Does anyone know if the follow-up papers are also funded by the UK public?