New PACE paper, more SMC spin.

[cigana]

On a positive note, I wonder if the publication of this paper will free up the FOI request for the trial data (as I understand it, the current reason the data is not being released is because they are awaiting publication of results based on it).

 

[Bob]

On a positive note, I wonder if the publication of this paper will free up the FOI request for the trial data (as I understand it, the current reason the data is not being released is because they are awaiting publication of results based on it).

Unfortunately it makes no difference; Their response that they were intending to publish some data related specifically to deterioration rates, if I remember correctly. And their deterioration data has already been published, some time ago. I forget which paper it was published in. (They did not publish the specific deterioration rates that were requested in the FOI request.)

 

[akrasia]

Sympathies to everyone in the UK who have had too endure these stupidities for so long.

A link that might be useful in a response is from a recent article in the American Psychological Association's house journal

http://www.apa.org/monitor/2014/10/beyond-tired.aspx

It supports the use of CBT as an aid in accepting losses and limitation and ends with this quote from Lenny Jason.

Given all the misconceptions, baffled physicians and public stigma, it's no wonder that CFS patients are fed up.

"We as psychologists have a tremendous amount to contribute" to the CFS community, Jason says. "But it has to be an appropriate role. We can't further stigmatize these patients."

Sorry for the belatedness.

 

[jimells]

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.

When it comes to morality and compassion, we haven't advanced very far from the Salem witch trials...

 

[Min]

On a positive note, I wonder if the publication of this paper will free up the FOI request for the trial data (as I understand it, the current reason the data is not being released is because they are awaiting publication of results based on it).

Good point, but I'm sure another feeble excuse will be rolled out.

 

[Bob]

Does anyone know of a research paper that demonstrates the effect size from a placebo intervention?

 

[charles shepherd]

MEA writes to the Daily Telegraph science editor about their coverage:


Dear Sarah

The reaction from people with ME/CFS to the press coverage of the new PACE trial research has, not surprisingly, been one of anger and upset.

On the MEA Facebook page (https://www.facebook.com/pages/ME-Association/171411469583186) we have now had over 200 people commenting, and I cannot find a single positive response about the conclusions and recommendations relating to this research.

In relation to the opening statement from your article in the Daily Telegraph:

'Fear of exercise exacerbates ME and sufferers need to try and get up out of bed if they want to get better, a major study by King's College has found.'

This is causing major concern because a very over simplistic statement about people needing to get out of bed if they want to get better (and presumably start exercising) is not what has been said in the research paper. And I would be very surprised if anyone from the research group used these words, or words to that effect, at the press briefing.

Please could you therefore retract a statement that should not be there.

On a practical level, activity management for people with severe ME/CFS who are bedbound might well involve some very gentle passive physiotherapy - but they cannot simply get out of bed, exercise, and recover.

If you would like to write something on ME/CFS that covers the complexities, uncertainties and differences of opinion surrounding this illness, and the reasons why people with ME/CFS feel so upset about the way it is sometimes covered in both the media and in medical journals, I would be very happy to discuss.

Regards

Dr Charles Shepherd

Hon Medical Adviser

MEAWebsite: http://www.meassociation.org.uk

 

[Sasha]

Thanks, @charles shepherd, for writing to the Daily Telegraph about their coverage. I hope you'll let us know what they reply, if you're able.

 

[Esther12]

Also, here's the Action for ME response:

PACE press reports: our response
15 Jan 2015

Using comment sections on newspaper websites where available, Action for M.E. has responded to the mainstream press reporting of yesterday’s Lancet Psychiatry paper that looks further at data from the PACE trial.

The headline of the Telegraph article implies that people with M.E. are making their symptoms worse by fearing to do exercise. There is no evidence for this. At best, this headline is misleading – while the headline used in the printed version of the article (Gentle exercise is best tonic for ‘yuppie flu’)is downright offensive.

Negative stereotypes perpetuated by language such as this only serves to perpetuate the ignorance, injustice and neglect experienced by people with the disabling neurological condition M.E.

The opening paragraph of a second Telegraph article states that “A major study by King's College found that people suffering from M.E. should get out of bed and exercise if they want to alleviate their condition.”

This is NOT what the research says. It says that graded exercise therapy, carried out by a trained and experienced professional, has some moderate benefit for some people with M.E. This does not include anyone severely affected (ie. house- or bed-bound) by the condition.

We also added to discussions about articles on theGuardianandIndependentwebsites, highlighting that the original data from the PACE trial upon which this Lancet paper is based, published in 2011, showed that the effects of the approaches tested (eg. CBT and GET) were moderate, contributing to improvement for up to 16% of patients over and above any benefit of standard medical care alone. It is clear that these approaches do not provide improvement for everyone with M.E.

Currently the Daily Mail’s website is not allowing us to comment onits articleso we will do this as soon as this function becomes available.

Have a look at our other news stories

http://www.actionforme.org.uk/get-informed/news/our-news/pace-press-reports-our-response

Maybe now is not the time to go into it, but at some point, I think it would be worth trying to have some sort of discussion about how patient group's responses to the media could be better. Maybe this is already going on behind the scenes. I realise this was a hard thing to reply to.

 

[Min]

Also, here's the Action for ME response:



http://www.actionforme.org.uk/get-informed/news/our-news/pace-press-reports-our-response

Maybe now is not the time to go into it, but at some point, I think it would be worth trying to have some sort of discussion about how patient group's responses to the media could be better. Maybe this is already going on behind the scenes. I realise this was a hard thing to reply to.

Maybe the responses would look less hypocritical if AfME had not been heavily involved in the PACE trial, and if AfME, the MEA and MERUK were not working with Prof White in a Collaborative that appears to have been set up by Wessely.

 

[Roy S]

(not sure if this one was posted)
　
Science Daily
"According to Professor Chalder, "Although the PACE trial results suggest that CBT and GET offer safe and effective treatment options for a majority of CFS patients, the improvements seen in the trial were moderate."
　
http://www.sciencedaily.com/releases/2015/01/150113204351.htm

 

[Bob]

We also added to discussions about articles on theGuardianandIndependentwebsites, highlighting that the original data from the PACE trial upon which this Lancet paper is based, published in 2011, showed that the effects of the approaches tested (eg. CBT and GET) were moderate, contributing to improvement for up to 16% of patients over and above any benefit of standard medical care alone. It is clear that these approaches do not provide improvement for everyone with M.E.

I'm pleased that they're aware of this, and are pointing it out at last.

 

[Bob]

Something helpful for a change...

ME/CFS Research UK Slams Lancet Psychiatry Report Advocating Exercise for Chronic Fatigue Syndrome Sufferers
Penny Swift
http://theargusreport.com/mecfs-res...rcise-for-chronic-fatigue-syndrome-sufferers/

Extract:

While the psychosocial approaches suggested do have some effect, according to the original PACE trial data they benefit only 10 to 15 percent of ME/CFS patients. Most patients are not helped using the techniques suggested, “a fact confirmed time and time again when ME charities survey their members.” Quite simply, most people suffering from ME/CFS do not get any benefit from “these interventions.”

 

[charles shepherd]

Maybe the responses would look less hypocritical if AfME had not been heavily involved in the PACE trial, and if AfME, the MEA and MERUK were not working with Prof White in a Collaborative that appears to have been set up by Wessely.

I know you don't like the Collaborative (and don't normally have anything positive to say about the MEA) but your assumption is incorrect.

The Collaborative followed on from the MRC Expert Group on ME/CFS.

The decision to set up a UK Research Collaborative was largely made by Professor Stephen Holgate and was based on the success of a similar research collaborative that he had played a major part in setting up for respiratory disease.

Professor Simon Wessely was not a member of the MRC Expert Group on ME/CFS and has not been invited to join the Board of the Collaborative.

The MEA has always been very critical of the PACE trial, and as you presumably know is one of the few charities that has consistently written to the medical journals and spoken to the press to express these concerns.

We have made our views very clear on this occasion and as you can see from earlier today I have written to The Daily Telegraph to ask them to retract the opening paragraph to their coverage of the new research.

 

[charles shepherd]

Thanks, @charles shepherd, for writing to the Daily Telegraph about their coverage. I hope you'll let us know what they reply, if you're able.

Reply

I hope they will because in my opinion this is the sort of inaccuracy that a newspaper has a duty to correct. I hesitate to get into a dispute with the Daily Telegraph because I have worked with them in the past in producing helpful material on ME/CFS. But I think we do have to try and get this particular paragraph removed/changed.

 

[charles shepherd]

Reply

I hope they will because in my opinion this is the sort of inaccuracy that a newspaper has a duty to correct. I hesitate to get into a dispute with the Daily Telegraph because I have worked with them in the past in producing helpful material on ME/CFS. But I think we do have to try and get this particular paragraph removed/changed.

Previous feature I did with the Daily Telegraph:

http://www.telegraph.co.uk/health/h...-all-in-the-mind-but-its-still-a-mystery.html

 

[Min]

@Dr Shepherd, according to infirmation obtained by the TYMES Trust, Prof Wessely was involved in the setting up of the Collaborative as I suggested:


https://m.facebook.com/tymestrust/posts/1494167207535083

 

[Min]

On 12th January 2013, Professor Stephen Holgate, Chair of what was at that point called the UK ME/CFS Research Collaborative (UK MCRC) sent an email to Collaborative group members stating: “As you will know, we have firmed up the date and place for the Inaugural
Launch of the UK ME/CFS Research Collaborative (UK MCRC). I attach a list of people that I intend to approach as researchers or those interested in supporting research in the field …”
(quote 1)
* Professor Holgate then emailed Professor Simon Wessely with importance marked as ‘High’ and copied only to Dr Esther Crawley of Bristol University and Joe McNamara of the MRC. It read “Dear Simon, If you feel there is anything you can do to help in identifying
researchers or in other ways, I would be very grateful. Thank you so much. Kind regards, Stephen.” (quote 2)
* Simon Wessely replied “First of all, it looks very good…… can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?....” Simon Wessely’s suggested researchers were redacted. (quote 3)
* Stephen Holgate replied “Wow! This is terrific, Simon – thanks so much. I will add your suggested names. Kindest regards, Stephen” (quote 4)
(NB At the end of January, Stephen Holgate sent an update on the issue of researchers to Collaborative group members (31st January 2013): “Please see attached list of research-interested people so far attending the launch… Could you see if there is anyone else we should include...?” (quote 5) The list of recipients
included Simon Wessely.)
* Again on Saturday 12th January, Stephen Holgate sent another email: ”To all: One point that I would like a view on is the terminology: CFS/ME or ME/CFS, NHS, NICE and MRC use
CFS/ME. I wish to be consistent so can I have a view from all please. I will then make any changes (including the name of the collaborative!)” (quote 6)
* Simon Wessely was on the list of recipients. He replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE. Journals certainly only use CFS. USA doesn’t use ME at all. CFS/ME seems to be the best compromise.
Nervous that ME/CFS would alienate one or two researchers not actively involved in area but who you would like to see involved.” (quote 7)
* This view was endorsed by Peter White “…… I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while allowing stratification where necessary.” (quote 8)
* Sonya Chowdhury, CEO of Action for ME (AfME) replied “ … my preference is that we use ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is
consistency and collaboration and if the general view differs, I will go with the majority.” (quote 9)
* The MEA stated a preference for ME/CFS but that they also were “happy to accept the majority view on this”. (quote 10)
* MERUK’s preference was also for ME/CFS, they added “we use ME/CFS as do the patient-based campaigning charities.” (quote 11)
* On 21st January Stephen Holgate emailed the group, “After undertaking a poll for preferences of a title, the CFS/ME terminology seems to be the option most wish to go for. It seems that the NHS, Research Councils and NICE use this terminology as do the majority
on Pubmed. I hope we can now accept this.” (quote 12)
· The Collaborative thus became the UK CFS/ME Research Collaborative (UK CMRC).

At the end of January a meeting was held at which 'harassment' of researchers was discussed:

The Medical Research Council (MRC) and the Science Media Centre (SMC) are two of the UK CMRC Observers. Ed Sykes, SMC Head of Mental Health, attends the meetings of the Executive
Board on behalf of the SMC, while Joe McNamara & Neha Issar-Brown attend on behalf of the MRC. The MRC contributed nearly £5000 to the launch of the Collaborative and have stated their
willingness to be involved in and contribute further both directly and in kind.
* On the 1st February 2013, an email was sent from the out-going Head of Mental Health at the SMC. It was a “write up of the main points to come out of” the ‘CFS’ meeting held at the Wellcome Trust the day before. (quote 13)
* “All the best with this for the future, I hope the launch of the research collaboration goes well and that it gets easier to do research in this field.” (quote 14)
* Those in attendance at this meeting had included UK CMRC members Peter White of QMUL, Joe McNamara and Carmel Turner of the MRC and Esther Crawley of Bristol University. Simon Wessely & Trudie Chalder of IOP, King’s College London were also in
attendance.

 

[Esther12]

I'm pleased that they're aware of this, and are pointing it out at last.

Better than it could have been, but still acting as if self-report measures are entirely reliable in a non-blinded trial. At the moment, just asserting that CBT and GET are moderately effective is a terrible thing. If they believe that is true then they should justify that belief and provide more information on the evidence that they think supports this claim.

Previous feature I did with the Daily Telegraph:

http://www.telegraph.co.uk/health/h...-all-in-the-mind-but-its-still-a-mystery.html

They were still acting like Pemberton was rabidly attacked by loons, when from what I saw it looked like people were pointing out that he'd been misled by claims about a 1/3 recovery rate. Seeing as his article was complaining about patients being insufficiently grateful for CBT/GET, that he'd failed to look at the evidence for efficacy was a bit of a screw-up and a legitimate reason for patients to tell him off for the poor quality of his work.

 

[charles shepherd]

Reply:

A wide range of clinicians, researchers and ME/CFS charities were consulted during the fairly long process of setting up the Collaborative - including psychiatrists. The emails you quote cover only a very small part of the process. As you already know, the Collaborative includes members from a whole spectrum of opinion - including psychiatry - on both cause and management. There are areas where members obviously agree and areas where members disagree. We take the view that it is better to be inside this 'big tent' of people who have considerable influence over the UK ME/CFS research agenda and making our views known rather than sitting outside in isolation.

This discussion is starting to go off topic. It is supposed to about media coverage of the new PACE trial data.