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Peter White et al: Patient support group management recommendations vs medical textbooks and webs

A.B.

Senior Member
Messages
3,780
in outlets with little or no quality standards.

White, Sharpe, Wessely and Deary are on the advisory board of this journal.

Deary isn't as well known but he wrote the cognitive behavioural model of medically unexplained
symptoms
on which the promoted interventions are based.

I would also like to know how these people continue to get funded. Are there people close to them, or with conflicts of interest, sitting on the board that allocates funds?
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Out of curiosity, does anyone have access to the full paper to see which patient groups they looked at? I can't access it. It's not that I object to the idea of handing over some money to Elsevier, obviously :)rolleyes:) but the thought that some of it would go into Peter White's pocket puts me off forking out the $30, which would otherwise be money well spent, I'm sure.
 
Messages
3,263
I would also like to know how these people continue to get funded.
I think the answer is very simple. No conspiracy. Its just that these groups target unexplained, untreatable illnesses, and funding bodies have to be seen to be doing at least something for these conditions. The psyc guys look like the real deal and have proper qualifications.

I also think doctors and medical researchers just imagine that the psychosomatic stuff must be proper science. People don't really want to take a closer look. And they certainly don't want to be seen as being down on psychological or psychiatry (even if, in secret, they roll their eyes a little at some of it).

Its such a shame, because there are so many people suffering from terrible distress due to depression, anxiety, substance abuse, and so forth. This waste of resources on our illness is taking away from those who really need psyc treatments. Particularly bad in the UK, I think, all those CFS "treatment centres". Such a waste of money.
 

Dolphin

Senior Member
Messages
17,567
In conclusion, although much is still in dispute in regards to CFS/ME, it is undoubtedly a debilitating illness, and clinicians need to be able to provide treatment as well as advice regarding whether to join a patient organisation [4]. Work needs to be done to establish a common understanding regarding treatment recommendations between medical sources and patient support organisations in order to provide consistent advice to patients about the most effective and safest treatments available.
There is no way that graded exercise therapy should be considered one of the safest therapies. Peter White is unbelievable.
 

Invisible Woman

Senior Member
Messages
1,267
I would also like to know how these people continue to get funded

They get funding because it is in the interests of big re insurance companies and the government states to be able to dismiss the suffering of a large group of people.

These folks have, over the years, enabled governments and insurance companies alike to dismiss policy & benefit claims on the grounds that there is nothing actually wrong with the individual - it's all just abnormal beliefs.

There is however their own special brand of CBT along with GET available to "rehabilitate". If this does not work then maybe it's because it wasn't carried out while in the care of either White or one his cronies. So another round is recommended. If this doesn't work, then it's because the patient has a vested interest in being sick.

These folks make a lot of money and save insurers and governments a lot of money by blaming the patient. Because they have the ears of the money men they have the friendship and support of many others who should be capable of seeing through their rubbish and doing something about it.
 

Dolphin

Senior Member
Messages
17,567
The reticence of patient organisations to recommend rehabilitative therapies may also be related to instances of poor delivery of these therapies [8].

[8] P.W. Gladwell, D. Pheby, T. Rodriguez, F. Poland, Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME, Disabil. Rehabil. 36 (2014) 387–394.
That link doesn't prove that all adverse reactions are due to poor delivery of graded exercise therapy.
 

Yogi

Senior Member
Messages
1,132
Just when I thought Peter White could not sink further.

He is preying on and indoctrinating young and naive medical students now. This is how predators work.

They are both 4th year medical students.

Miriam Mallett

Miriam Mallett was awarded a prize for outstanding contribution to the RSM Psychiatry section student and trainee prize. She was sadly unwell and could not attend the presentation. The paper she submitted was a summarised version of her dissertation that she completed with her tutor Professor White, and colleague Eleanor King, in her 4th year of medical school. The paper is a survey of recommended treatment options for chronic fatigue syndrome comparing patient organisations with medical authorities

http://www.wolfson.qmul.ac.uk/files/pdf/PsychiatryNewsletterIssue9.pdf


Eleanor King

Fourth-year medical student Eleanor King has been awarded the Pathfinder Fellowship by the Royal College of Psychiatrists (RCPsych), the first time it has been awarded to a student from the School of Medicine and Dentistry. Eleanor was one of nine students chosen this year from over 100 applicants.

The Fellowship includes personal mentorship, networking opportunities, support of up to £5,000 over three years to fund a research project and attendance at RCPsych International Congress meetings.

http://www.wolfson.qmul.ac.uk/newsa...tudent-wins-prestigious-psychiatry-fellowship


These poor students need to be contacted and be made aware of the background of Peter White and his insurance vested interests and the harm he has caused ME patients and the PACE trial. They will not be aware of the the politics of what is behind Peter White asking them to add their names to this so called research.
 
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Dolphin

Senior Member
Messages
17,567
The findings from this study inform healthcare professionals about what types of treatments are commonly recommended by patient support groups on the internet, and that this may conflict with established treatment guidelines. This may additionally have an effect on the response and expectations of patients; Cho et al. [12] demonstrated that CFS/ME patients respond to the treatment that best reflects their views on the illness. CFS/ME is almost unique within medicine in having such a marked discrepancy of views between patient organisations and medical authorities, although another example is chronic Lyme disease [9,13]. These discrepancies are often based on different understanding of the concepts of illness and disease [14], as well as using different language to describe similar approaches, such as baseline setting and pacing [8].

[12] H.J. Cho, M. Hotopf, S.Wessely, The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta-analysis, Psychosom. Med. 67 (2005) 301–313.
Cho et al didn't show that.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think the answer is very simple. No conspiracy.
I agree that conspiracy isn't necessary, it just needs the way the world works. I pointed out one aspect of this in an old blog:

http://forums.phoenixrising.me/index.php?entries/the-doggy-treat-model-of-why-it-is-so.830/

This does not rule out conspiracy, conspiracy is really just another name for politics a lot of the time, people making deals behind the scenes. However there does not have to be any overarching conspiracy, just politics, greed, limited vision, lack of reasoning or compassion, and so on. People then do the rest.
 

Seven7

Seven
Messages
3,444
Location
USA
The problem I see
I agree that conspiracy isn't necessary
The problem is that as a community ME/CFS has to send a clear message to each attempt from this group.

Our dismissive attitude is only hurting the community at world level. Every paper from this group has to be clearly and professionally challenged. The UK specially patient organizations has to react appropriately because we need to protect the kids, teens and the bed ridden. Those of us that have the little energy to fight back, have to start giving space to the Physio evidence and destroying the crappy science.

This is a different ball game, they are evidently not going to retire elegantly and quietly . Nor apparently evidence will be enough. Action is required to challenge this group.
 
Messages
13,774
Dolphin pulled out most of the bits I was going to.

Funny how they don't make any effort to show CBT/GET are actually rehabilitative. Would have been nice if they'd cited something that could be picked apart.

In this study it was possible to score a large number of sources, in-
cluding all available UK based CFS/ME patient support organisations
that had a website

They only had 35 websites. And that includes One-Click, so it can't be that they require organisations to have memberships. 35 seems low. eg: It looks like they didn't have the Sussex and Kent ME society... White attended one of their conferences!

In conclusion, although much is still in dispute in regards to CFS/ME,
it is undoubtedly a debilitating illness, and clinicians need to be able to
provide treatment as well as advice regarding whether to join a patient
organisation
[4]
.

This feels so much like a build up to an attack on patient groups with PACE data on predictors showing membership of a patient group was associated with participants being less likely to report improvements with CBT/GET.

IMO: They were so close to total, crushing victory (at least in the UK) over patients concerned about how CBT/GET were being promoted, and it is interesting to see how they were able to play things to create a fantasy land within the academic literature, and how they seem to be plugging on with their project even as there's growing awareness in academic circles of the problems with the research underling claims about the efficacy of CBT/GET. This papers failure to even mention the concerns raised by academics and patients about PACE etc is ridiculous.
 
Messages
13,774
So the sources assessed seem a bit random, the assessments of 'support' cannot be blinded, and it's fairly clear that White has a dog in this race. As with the White/Hossenbaccus study cited, this seems like a pretty clear attempt at presenting political propaganda as medical research.

Here's a copy of the sources they cited in the supplementary material:

Worcestershire ME support group
http://worcsmegroup
.weebly.com/what-
is
-cfs-me.html
North London ME Network
http://www
.nlmenetwork.org.uk/doc-nice-guidelines-comment.php
Sheffield ME Group
http://www
.sheffieldmegroup.co.uk/manage.htm
Grace Charity for ME
http://www
.thegracecharityforme.org/guidance.asp
ME Action UK
http://www
.meactionuk.org.uk/treatments.html
ME Diary
http://www
.mecfsdiary.com/mecfs/treatment/
Edinburgh M.E. self help group
http://www
.edmesh.org.uk/help-advice/living-with-m-
e/
Smile for ME
http://www
.smileforme.org.uk/spoon-theory/
ME Derbyshire
http://me
-derbyshire.org.uk/about-mecfs/
ME Support Norfolk
http://www
.mesupportnorfolk.co.uk
Bury/Bolton ME/CFS Support group
http://www
.mesupportgroup.co.uk/bbmewhatisme.html
Medical authorities

Medical authorities

NHS Choices http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Treatment.aspx

RCPsych http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/tiredness.aspx

NHS inform http://www.nhsinform.co.uk/health-library/articles/c/chronic-fatigue-syndrome/treatment/

NHS Direct Wales http://www.nhsdirect.wales.nhs.uk/e...nicfatiguesyndrome(myalgicencephalomyelitis)/

NICE Guidelines http://www.nice.org.uk/guidance/cg53

Department of Health https://www.gov.uk/government/uploa...data/file/384481/chronic_fatigue_syndrome.pdf

Royal college of Paediatrics and Child Health (RCPCH) http://www.rcpch.ac.uk/system/files/protected/page/RCPCH CFS.pdf

Royal College of Physicians https://www.rcplondon.ac.uk/publications/chronic-fatigue-syndrome

Royal College of GPs http://www.nice.org.uk/guidance/cg5...ome-myalgic-encephalomyelitis-full-guideline3

Bupa UK http://www.bupa.co.uk/individuals/health.../hi-chronic-fatigue-syndrome

Great Ormond street hospital for children NHS foundation trust http://www.gosh.nhs.uk/teenagers/your-condition/chronic-fatigue-syndrome/

Oxford Handbook of Clinical Specialities (Collier) 9780199591183 https://www.dropbox.com/s/0u3q864bz4nlp4v/OHCS.jpg?dl=0

Oxford Handbook of Clinical Medicine (Longmore) 9780199232178 https://www.dropbox.com/s/v78uiyaj3adcj5z/OHCM.jpg?dl=0

Neurology: An illustrated colour text (Fuller, Mansford)9780702032240 https://www.dropbox.com/s/e7qi83y9twvj5zw/Neuro illustrated.jpg?dl=0

Psychiatry (Burton) 9781405136525 https://www.dropbox.com/s/al5o71rqtj9dmej/Psychiatry (Burton).jpg?dl=0

Core Psychiatry (Stern, Wright, Phelan)9780702024900 https://www.dropbox.com/s/wrcrcbek8vhn2s0/Core Psychiatry2.jpg?dl=0

Companion to psychiatric studies (Johnson) 9780443072635 https://www.dropbox.com/s/jpk1ifbnr9kiz3c/Companion to psy3.jpg?dl=0

Lecture Notes: Psychiatry (Harrison, Geddes, Sharpe) 9781405118699 https://www.dropbox.com/s/hpi7odji5eqbcwb/Lecture notes Psych2.jpg?dl=0

Handbook of Liaison Psychiatry (Lloyd, Guthrie)9780511284625 https://www.dropbox.com/s/kihbiyf3if8yiko/Handbook Liaison psych2.jpg?dl=0

Hughes' Outline of Modern Psychiatry (Barraclough, Gill) 9780471963585 https://www.dropbox.com/s/hbkpn1nvusioh8c/Hughes Outline of modern psych2.jpg?dl=0

Kaplan & Sadock's comprehensive textbook of psychiatry 9780781734349 https://www.dropbox.com/s/5b0bkc94ere0up8/Kaplan textbook of psych2.jpg?dl=0

https://www.dropbox.com/s/dwpfruauf402b4v/Kaplan textbook of psych3.jpg?dl=0

New Oxford textbook of psychiatry (Gelder) 9780199206698 https://www.dropbox.com/s/1p3336xa1gd1zqm/New Ox textbook psych2.jpg?dl=0

https://www.dropbox.com/s/j1jkvynsz408y02/New Ox textbook psych3.jpg?dl=0

https://www.dropbox.com/s/2ncq8t7dva9a2i8/New Ox textbook psych4.jpg?dl=0

Oxford handbook of psychiatry (Semple, Smyth) 9780191503085 https://www.dropbox.com/s/fjbmsd8fc37u4ms/Ox Handbook of psych2.jpg?dl=0

Postgraduate psychiatry: clinical and scientific foundations (Appleby) 9780340763773 https://www.dropbox.com/s/ppu0xx3tg44p5wn/Postgrad Psych2.jpg?dl=0

Psychiatry (Gelder, Mayou, Geddes) 9780198528630 https://www.dropbox.com/s/8ikx7dd5ow0ljz9/Psych Gelder2.jpg?dl=0

Textbook of Psychiatry (Puri, Treasaden) 9780702031571 https://www.dropbox.com/s/nc8t0sdrrsttdz4/Textbook of Psych2.jpg?dl=0

Kaplan & Sadock's synopsis of psychiatry: behavioral sciences/clinical psychiatry 9780781773270 https://www.dropbox.com/s/4u31j0cfi8d6a8g/Synopsis of Psych2.jpg?dl=0

https://www.dropbox.com/s/aaniqouofavphxw/Synopsis of Psych3.jpg?dl=0

Shorter Oxford textbook of psychiatry (Gelder, Harrison, Cowen) 9780198568964 https://www.dropbox.com/s/7vax7rfk94cfedg/Shorter Ox Textbook2.jpg?dl=0

https://www.dropbox.com/s/8g2nd2dxh9jhfch/Shorter Ox Textbook3.jpg?dl=0

Cambridge handbook of psychology, health and medicine (Ayers) 9780521605106 https://www.dropbox.com/s/breos19dy9dzz0h/Psychol,health and med2.jpg?dl=0

Clinical Neurology (Fowler, Scadding) 9780340807989 https://www.dropbox.com/s/w39j7ohn39e3hac/Clinical neuro2.jpg?dl=0

https://www.dropbox.com/s/vgqqkvaa4e1g8mm/Clinical neuro3.jpg?dl=0

Lecture Notes: Neurology (Ginsberg) 9781405177221 https://www.dropbox.com/s/fzcmlr8v3dzaigp/lecture notes neuro2.jpg?dl=0

Neurology in Clinical Practice (Bradley) 9780750694773 https://www.dropbox.com/s/immxwb5gb4uer5k/Neuro in clinical practice2.jpg?dl=0

Adams and Victor's principles of neurology 9780071416207 https://www.dropbox.com/s/l7x5bhv1bqsqho4/Principles of neurology2.jpg?dl=0

ABC of Psychological Medicine (Mayou, Sharpe, Carson) 9780585441214 https://www.dropbox.com/s/m3dehjccleelcfh/ABC of psych medicine2.jpg?dl=0

https://www.dropbox.com/s/7xtdudopal2ysw7/ABC of psych medicine3.jpg?dl=0

Student Psychiatry Today (Cohen, Hart) 9780750615860 https://www.dropbox.com/s/t02h895xur14119/Student Psych today2.jpg?dl=0

Medicine at a Glance (Davey) 9781405186162 https://www.dropbox.com/s/ryrt4keamd4oulm/Medicine at a glance2.jpg?dl=0

Davidson's principles & practice of medicine (Boon, Davidson) 9780443101335 https://www.dropbox.com/s/bjxsqk3m16j2zrf/Davidsons2.jpg?dl=0

Color atlas and text of clinical medicine (Forbes, Jackson) 9780723431947 https://www.dropbox.com/s/2svz3059mf3tr9a/Colour atlas clinical med2.jpg?dl=0

Goldman's Cecil medicine (Cecil, Goldman, Schafer) 9781437716047 https://www.dropbox.com/s/24vj123dvkui16m/Cecil med2.jpg?dl=0
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is a different ball game, they are evidently not going to retire elegantly and quietly . Nor apparently evidence will be enough. Action is required to challenge this group.
I completely agree. There is a long history of psychogenic babble, and despite hundreds if not thousands of failures, and no proven successes in their claims, they continue.

PS By failures I mean with entire diseases and disease categories, including heart disease and cancer.
 
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Comet

I'm Not Imaginary
Messages
693
They get funding because it is in the interests of big re insurance companies and the government states to be able to dismiss the suffering of a large group of people.

These folks have, over the years, enabled governments and insurance companies alike to dismiss policy & benefit claims on the grounds that there is nothing actually wrong with the individual - it's all just abnormal beliefs.

There is however their own special brand of CBT along with GET available to "rehabilitate". If this does not work then maybe it's because it wasn't carried out while in the care of either White or one his cronies. So another round is recommended. If this doesn't work, then it's because the patient has a vested interest in being sick.

These folks make a lot of money and save insurers and governments a lot of money by blaming the patient. Because they have the ears of the money men they have the friendship and support of many others who should be capable of seeing through their rubbish and doing something about it.
This is evidenced by the fact that new studies are pushing self-help leaflets and a skype consultation or two for PWME. I don't know how they could spend less money and still appear to treat us - although they will probably find a way.
 

Invisible Woman

Senior Member
Messages
1,267
The thing is most GPs are completely unaware of the whole PACE story so they swallow this BS. NICE and NHS England are aware of at least some of the issues but won't do anything about it.

It is not just patients that these so-and-sos are lying to - it's doctors as well. I think if GPs knew the true story, and the fact that they are deliberately being kept in ignorance there would be trouble. Its bad enough as a patient but if I was treating people and recommending a regime which stood a strong chance of making people worse and then found out that information was deliberately being witheld....by the organizations that are there to protect patients...
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
So the sources assessed seem a bit random, the assessments of 'support' cannot be blinded, and it's fairly clear that White has a dog in this race. As with the White/Hossenbaccus study cited, this seems like a pretty clear attempt at presenting political propaganda as medical research.

'Random' is putting it mildly!

Nice to see 'spoon theory' getting a mention in there, presumably as an example of naughty patient support groups with their naughty non-professional advice.
 
Messages
2,125
complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.
I'm confused. Apart from anti-depressants I've never been offered anything else. CAM I thought most people did this off their own bat and paid for it/organised it themselves. Rehabilitive; well if you count 'go home and take it easy and in 5-10 years it'll all seem like a bad dream' that's all I've had. My first GP had to lie on the forms to get blood tests done. But they've never been repeated; my condition hasn't been monitored in any way for 10 years.

So will someone please tell me what are these treatments that are supposedly currently on offer on the NHS?:bang-head: