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Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

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charles shepherd

Senior Member
Messages
2,239
PACE TRIAL ACTION POINTS FROM THE MEA: WEDNESDAY 28 OCTOBER

Although I was up till nearly 1am this morning pushing out the MEA press release on the new PACE trail paper to various contacts and dealing with comments on various social media outlets, I have not been able to get involved with the follow up during the day as I have been travelling to and from an important research meeting that could not be postponed, and only got home at 9pm

Before leaving Glos early this morning I was contacted by BBC Radio 5 Live to take part in two of their programmes during the day that were covering the story - both of which could not be followed through due to clashes with travelling arrangements

I did however pre-record a six minute interview for the BBC which I understand is being used on various local radio stations:

BBC Norfolk version is here: http://www.bbc.co.uk/programmes/p034hs9t
There is quite a long segment on ME/CFS which is conducted by a good interviewer, Nick Conrad, starting after about 1.20 minutes of the morning programme

Comments from myself and the MEA have also been published in a number of newspapers - including the Daily Mail and Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

I will be spending much of tomorrow (Thursday) dealing with this new research paper and the media reaction to it

I will be sending a formal complaint to the Daily Telegraph regarding their factually inaccurate and potentially harmful headline to their news item and asking for an equally prominent correction:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'
Oxford University has found ME is not actually a chronic illness

I will also be sending an 'intended for publication' reply to the DT

Fiinally, I am very concerned about the way in which adverse, inaccurate and very upsetting coverage of ME/CFS has once again followed on from a press briefing at the Science Media Centre.

I will be raising this at the next meeting of the Board of the UK Research Collaborative.

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Comment in the Lancet Psychiatry. It takes a while to get going and isn't really worth a read............but for the sake of completeness:

Chronic fatigue syndrome: what is it and how to treat?
Steven Moylan
Harris A Eyre
Michael Berk
Ever since neurologist George Miller Beard coined the term neurasthenia in the 19th century,1 dozens of names have been used to describe illnesses resembling chronic fatigue syndrome. The diverse nomenclature reflects heterogeneity in the disorder's conceptualisation, spawning terms as divergent as chronic Epstein–Barr virus, epidemic neuromyasthenia, systemic exertion intolerance disease, post-viral fatigue syndrome, myalgic encephalomyelitis, and chronic fatigue immune dysfunction syndrome. The diversity in nomenclature parallels the diversity in therapies assessed for this frequently refractory cluster of symptoms, which include pharmacological (eg, fluoxetine, rintatolimod, galantamine), psychological (eg, cognitive therapy, adaptive pacing therapy), and lifestyle interventions (eg, exercise).
Click to expand...

http://www.thelancet.com/pdfs/journals/lanpsy/PIIS2215-0366(15)00475-7.pdf
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@charles shepherd, thanks so much for all your hard work, Charles. It sounds exhausting.

If the media outlets don't retract or correct their inaccuracies, it is now possible to make complaints about factual accuracy via IPSO. Anyone can do that.

IPSO's role is to enforce the editor's Code of Practice, which includes clauses re accuracy and discrimination against people with illness or disability.

"i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability."
 
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Cheshire

Cheshire

Senior Member
Messages
1,129
@Tom Kindlon interviewed !

Backlash as study claims exercise can combat ME
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Eilish O'Regan Twitter
Email

Published 29/10/2015 | 02:30

page10_kindlon.jpg
1
CFS sufferer Tom Kindlon
A new study suggests that Chronic Fatigue Syndrome, or ME, is not actually a chronic illness and can be overcome by increasing exercise and thinking positively.


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The study, from Oxford University, claimed that graded exercise therapy, in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact on the condition.

But Tom Kindlon, vice-chairman of the Irish ME and Chronic Fatigue Association, said it was too simplistic and potentially harmful.
Click to expand...

http://www.independent.ie/irish-new...y-claims-exercise-can-combat-me-34151219.html
 
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Y

Yogi

Senior Member
Messages
1,132
Bob said:
@charles shepherd, thanks so much for all your hard work, Charles. It sounds exhausting.

If the media outlets don't retract or correct their inaccuracies, it is now possible to make complaints about factual accuracy via IPSO. Anyone can do that.

IPSO's role is to enforce the editor's Code of Practice, which includes clauses re accuracy and discrimination against people with illness or disability.

"i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability."
Click to expand...

The problem here is it is institutionalised discrimination.

Don't 'shoot the messenger' is very appropriate here. The press will say they were advised by the SMC and that medical opinion suggested it to them. Sharpe and White and MossMoriss and Wessely are ultimately responsible along with the SMC.
 
Y

Yogi

Senior Member
Messages
1,132
charles shepherd said:
PACE TRIAL ACTION POINTS FROM THE MEA: WEDNESDAY 28 OCTOBER

Although I was up till nearly 1am this morning pushing out the MEA press release on the new PACE trail paper to various contacts and dealing with comments on various social media outlets, I have not been able to get involved with the follow up during the day as I have been travelling to and from an important research meeting that could not be postponed, and only got home at 9pm

Before leaving Glos early this morning I was contacted by BBC Radio 5 Live to take part in two of their programmes during the day that were covering the story - both of which could not be followed through due to clashes with travelling arrangements

I did however pre-record a six minute interview for the BBC which I understand is being used on various local radio stations:

BBC Norfolk version is here: http://www.bbc.co.uk/programmes/p034hs9t
There is quite a long segment on ME/CFS which is conducted by a good interviewer, Nick Conrad, starting after about 1.20 minutes of the morning programme

Comments from myself and the MEA have also been published in a number of newspapers - including the Daily Mail and Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

I will be spending much of tomorrow (Thursday) dealing with this new research paper and the media reaction to it

I will be sending a formal complaint to the Daily Telegraph regarding their factually inaccurate and potentially harmful headline to their news item and asking for an equally prominent correction:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'
Oxford University has found ME is not actually a chronic illness

I will also be sending an 'intended for publication' reply to the DT

Fiinally, I am very concerned about the way in which adverse, inaccurate and very upsetting coverage of ME/CFS has once again followed on from a press briefing at the Science Media Centre.

I will be raising this at the next meeting of the Board of the UK Research Collaborative.

Dr Charles Shepherd
Hon Medical Adviser, MEA
Click to expand...

Thank you for challenging this and posting on the forum. Really appreciated.

It seems like groundhog day again. You have a very tough job and I don't envy it in refuting this "bunkum"

I see that we had the same issue in 2011 and January 2015 regarding PACE trial.

http://www.meassociation.org.uk/2011/02/me-association-press-statement-on-the-pace-trial-results/

http://www.meassociation.org.uk/201...on-and-the-science-media-centre-3-march-2015/

Anyway just my opinion:

1. Someone on these forums suggested yesterday (can't remember) that you should write to both the pace trial investigators themselves AND the SMC/press. This is very important otherwise if you only wrote to one party they will simply point the finger at the other and play you off each other which is their strategy.

2. It would be good if the charities could coordinate a letter jointly to give it more impact and they cannot dismiss it as a minority view which is another strategy they have used.

3. The MEA press release was very good. Is it possible to emphasise to the media the vested interests behind the PACE trial and that it was the first medical trial funded by the Department for work and pensions (DWP)?

4. That the principal investigators have conflicts of interest as they are consultants and Chief Medical Officers to disability insurance companies who have a vested interest.

5. Emphasise the timing between this study and the David Tuller investigation which the PIs refused to respond to legitimate questions about flaws in PACE trial.

Just my thoughts!!
 
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C

charles shepherd

Senior Member
Messages
2,239
MEA writes to The Daily Telegraph to ask them to retract and correct their inaccurate and offensive headings to the news item on the PACE trial

We will be sending a response to the actual news item later today

This latter response will not be placed on the MEA website immediately because doing so can affect the chance of a letter being published
CS

Dear Editor

Re: Daily Telegraph, Wednesday October 28th 2015 - Front page coverage of ME/CFS research and the PACE trial:
http://www.telegraph.co.uk/news/hea...tive-thinking-and-exercise.html#disqus_thread

I will be sending an 'intended for publication' letter to you in response to this news item later today.
However, it is factually inaccurate to state in the main heading that:

Oxford University has found ME is not actually a chronic illness

No such conclusion from 'Oxford University' was reported in the research paper, or the press release from the research group, or by anyone involved in the PACE trial from Oxford University
This is an important and prominent factual inaccuracy that requires an equally prominent correction/retraction.
So please could you let me know what action you will be taking.

I would also point out that the other heading to this news item:

Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise'

is misleading, insensitive and offensive to the thousands of well motivated people who are doing their very best to manage a complex long term illness that is classified by the World Health Organisation (in ICD10, G93:3) as a neurological (not psychiatric) disease.

It really is about time that the Daily Telegraph produced some balanced reporting on what is really happening to research in ME/CFS, such as the report in the Guardian:
http://www.theguardian.com/society/...cise-oxford-university-study-exercise-cbt-cfs

and the important research findings that were presented at the recent UK Research Collaborative conference:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Yours sincerely

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Website: www.meassociation.org.uk
 
J

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Anyone know if 'The Times' has covered this story? They have been vehemently in the Wessely camp for decades, but have gone quiet recently. Wonder if new science editor, Tom Whipple, takes a different view.
 
C

charles shepherd

Senior Member
Messages
2,239
JohntheJack said:
Anyone know if 'The Times' has covered this story? They have been vehemently in the Wessely camp for decades, but have gone quiet recently. Wonder if new science editor, Tom Whipple, takes a different view.
Click to expand...

I looked through The Times on the train yesterday.

Not a sausage in the paper copy.

On-line is behind a pay wall but we haven't had any reports of Times coverage from MEA members.
 
J

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Bob said:
As in critique the original 2011 paper. Not carry out a new pace trial?
Click to expand...

Yes, sorry I should have made that clear.

'[To be continued later if there is interest in my doing so. If there is, I will discuss the disappearance of objective measures of functioning from the PACE study and you will find out why you should find some 3-D glasses if you are going to search for reports of these outcomes.]'
 
D

Dolphin

Senior Member
Messages
17,567
(Apologies if this has been posted before)

Somebody in the US posted on Oct 28:

BBC radio played an interview with Michael Sharpe just now. I walked in the room after it started, so I do not know if Tuller's article was mentioned. Dan Damon was the host for the program called World Update, which is broadcast by the local NPR station in my area at 5 am. I think it began at 10 am GMT.
Click to expand...

(She posted to the list at 9:44 GMT so I think may have started at 9am GMT (UK and US times have odd differences at the moment e.g. UK only four hours ahead of EST))
 
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