Article about ME/PACE for British newspaper - what do you want included?

[harveythecat]

also - this forum is amazing and everyone is so knowledgeable!

 

[JoanDublin]

Another pet peeve for me in articles about ME is the constant statement that "there is no test." First, there's the specter of uncertainty in the reader's mind (no test? Well then all I've heard about it being not real/psych based still seems plausible).

And then there's the fact that it's not true. No, there's no simple blood test that says yes you have it or no you don't...but there ARE good objective tests that, in combination, make diagnosis pretty airtight and, more importantly, can guide treatment that will improve quality of life.

And so few of us have access to those tests. That should be a scandal.

Vasha

I think this is an excellent angle. You wont find something if you are looking in the wrong place and the common and garden blood tests are not suitable when determining if someone has ME. Lupus has no objective single test either but diagnosis is made using a range of criteria and tests. The information on objective testing is widely available and people with suspected M.E. need to have these tests made available to them - if nothing else it can separate them from others with 'fatiguing' illnesses which are included in a toxic mix of patients for poor UK research

 

[Stewart]

What mainstream criticism of the PACE trial has been bad for us, or led to a response that was harmful?

The PACE researchers were spinning about unreasonable militant patients from the get-go, and they've largely been able to define patient criticism of PACE on there own terms because no mainstream publication has been willing to detail our legitimate concerns..

I might be wrong, but my recollection is that PACE was published in February/March 2011 and the immediate patient backlash against the research was part of the initial media coverage. Throughout March, April and May (when the Lancet published some of the correspondence they'd received critiquing the trial) the PACE authors found they couldn't talk about their work without also having to field questions about the patient criticisms.

Then in July and August that year a flurry of articles appeared on the BBC, the Observer, The Times, The Daily Mail, The Telegraph, The Spectator, The BMJ and The Scientist magazine (to name but a few) claiming that there was an organised campaign of harassment being waged against ME/CFS researchers. The timing of this story can't have been a coincidence. I don't remember hearing any claims of harassment before these articles, and the media certainly reported it at the time as a 'new' story. It's largely a consequence of these allegations that 'no mainstream publication has been willing to detail our legitimate concerns' over the last 5 years. So to answer your question, the only time there was mainstream criticism of the PACE trial was immediately after it was published, and the response of the BPS school turned out to be pretty detrimental to the interests of the patient community in the long run.

Please don't get me wrong - like you I'd love to see a mainstream media outlet do a comprehensive take down of PACE's failings. But I don't think this article (700 words in the Society section) is the right place for it. And I also don't think it's the right time yet for such an article. Progress has definitely been made over the last year, but not enough for the mainstream media to take an interest. As far as they're concerned the story has progressed from being a dispute between caring researchers and unappreciative patients to being a technical dispute between two groups of scientists ("Your research is methodologically unsound!" "Oh no it isn't!"). Without a "smoking gun" to prove that the serious complaints made against the PACE team have some substance I suspect this will (unfortunately) remain a story of limited mainstream interest.

Of course if the Information Tribunal upholds the ICO's decision that the trial data should be released - or if PLOS One stands their ground and forces McCrone et al hand over over the data or withdraw their 2012 paper - then there may well be something more substantial for the media to take an interest in. I'm keeping my fingers crossed...

 

[Esther12]

So to answer your question, the only time there was mainstream criticism of the PACE trial was immediately after it was published, and the response of the BPS school turned out to be pretty detrimental to the interests of the patient community in the long run.

What mainstream reporting of criticism of the PACE trial was there? I do not recall any, although I could have missed some. There was a campaign in the mainstream media to present patient's concerns about PACE as unreasonable harassment, but there was not any detailing of what patient's criticism of PACE actually was. I don't see these past successes at preventing coverage of criticism of PACE as any reason to think that coverage of criticisms of PACE would be harmful.

 

[harveythecat]

I'm looking into how many pwme are able to get benefits in the UK. I've found some FOI requests but the DWP will not break down statistics by specific illnesses, so I can't find an exact figure.
I found this on the ME Association's site http://www.meassociation.org.uk/201...nt-work-capability-assessment-benefit-review/

which suggests that more than 75% of pwme are turned away from ESA.

However, that's from 2010. Does anyone know if there are any other useful numbers anywhere?

Thanks

 

[taniaaust1]

I agree that the fact that it is the patients that have exposed the bad science is an important part of the story. But one could add to that that some psychiatrists actually very much agree and are asking if any of their research is up to scratch, and physicians are beginning to see just how much the patients have been duped. So you can end up with good biomedical science chasing the psychiatric moneylenders out of the Temple - so to speak.

maybe that though would give the wessely schoolers a good opportunity to get their own comment piece in though as a follow up due to their psych views and to state that most psychriastrist do believe in GET and CBT for this (article is going into an UK paper after all and they are bound to notice and respond in some way, I dont think they'd allow that to go unchallenged).
........

maybe it would be better to focus on things they cant challenge so much to not possibly give them a final word there eg some of the science which is being done currently or coming out or the lack of funding being put into such a terrible disease compared to other diseases.

 

[Chezboo]

@harveythecat I'm not sure if this answers your question about ESA but there are some very stark facts in this report by Catherine Hale (commissioned by Action for ME) so it might be worth a look in relation to the total lack of government support.

https://www.actionforme.org.uk/uploads/pdfs/close-to-collapse-report-UPDATED.pdf

From page 4
"Key findings
There is a shocking gap between support needs and service provision.
• A staggering 97% of respondents told us they experience two or more difficulties with
daily living activities listed in the Care Act 2014 for England.
• However, just 16% had received social care assessments
• Of these, only 6% had been awarded a care package"

 

[Stewart]

What mainstream reporting of criticism of the PACE trial was there? I do not recall any, although I could have missed some. There was a campaign in the mainstream media to present patient's concerns about PACE as unreasonable harassment, but there was not any detailing of what patient's criticism of PACE actually was. I don't see these past successes at preventing coverage of criticism of PACE as any reason to think that coverage of criticisms of PACE would be harmful.

As I said in my last message, I might be misremembering - but I recall patient criticism of PACE being part of the story right from the first articles about the trial outcome. Obviously at that point nobody had been able to go through the results and see exactly what it was that Sharpe, White et al had done, but the initial reaction from patient groups was that the trial findings were totally at odds with patients' experience of the treatments, and that the PACE team were hardly neutral investigators. My recollection is that these criticisms were part of the story, in at least some of the mainstream media coverage.

The Australian radio interview with Sharpe and Richard Horton, which was conducted only a couple of months after PACE's publication, spent almost as much time dealing with the patient reaction as it did discussing the trial results. So as I say, my recollection is that the critical reaction of patients was a big part of the early PACE story - the 'unreasonable harassment' claims followed a few months later, I suspect as a (highly successful) attempt to develop a narrative that was more favourable to the PACE team and to sideline the trial's critics.

(As an aside: during the radio interview, which was in April 2011, when specifically asked about harassment Sharpe said only that he and other researchers had received unpleasant emails and had nasty things written about them online. By August 2011 he was telling the Observer that he had been stalked by an ME activist with a knife, and that the 'hate campaign' against researchers was so bad that many people were being driven from the field. I guess the situation must have deteriorated pretty quickly...)

Obviously the criticisms of PACE have changed considerably since it was first published, as people like Tom Kindlon (along with many others) have had time to carefully analyse the results and see exactly what it was the investigators did. You're right to say that those criticisms haven't been picked up by the mainstream media so far - but as I said in my last post I don't think we've got the clear and conclusive evidence to back up those claims yet. As long as this remains a technical dispute between two groups of scientists, researchers and academics about the methodology of a complex trial I think it will be difficult to get the mainstream media interested.

 

[Esther12]

As I said in my last message

But none of that did detail specific criticisms of the PACE trial, did it? I saw the ABC interview as providing time for Sharpe and Horton to misrepresent patient concerns at their request. There was no tough questioning for them, was there? And it was unusual for Horton to be involved in that way, and again seemed to stem from his personal involvement and prejudices.

Horton was slamming the MEA for behaving shamefully by raising concerns about the results of the PACE trial not concording with what they are told by members the day before PACE came out. I think it's pretty clear that they expected to face patient concerns about the way they were presenting their results, and we re commited to trying to present this as anti-science, anti-patient from the get go. The only way to have avoided that would have been to embrace the spinning of PACE results ... and that would not have been a good idea imo.

but as I said in my last post I don't think we've got the clear and conclusive evidence to back up those claims yet.

I'm not sure that I'm following you here.

As long as this remains a technical dispute between two groups of scientists, researchers and academics about the methodology of a complex trial I think it will be difficult to get the mainstream media interested.

I agree, but think that it is worth trying, and that it is important that there is a place for critics of the PACE trial to be able to explain their real concerns, rather than for the only mainstream representations of their views to have come from the PACE researchers.

 

[ukxmrv]

Here is an example of early coverage of PACE from Feb 2011. This was before the "patients are dangerous" narrative started I think

http://news.sky.com/story/837743/talking-and-exercise-could-cure-me-study

http://www.meassociation.org.uk/2011/02/pace-study-results-– sky-news-today-18-february-2011/

 

[worldbackwards]

I found this on the ME Association's site http://www.meassociation.org.uk/201...nt-work-capability-assessment-benefit-review/

which suggests that more than 75% of pwme are turned away from ESA.

However, that's from 2010.

At that point, 75% of everyone was turned away, so I wouldn't read too much into that. My understanding is that it isn't that much worse than for other illnesses, although some here have speculated that it is easier to renew claims than launch new ones. I don't know if anyone has reliable figures, though there was an MEA survey a couple of years after that: http://www.meassociation.org.uk/archive-of-mea-surveys/?poll_page=5

• If you have applied for ESA (Employment and Support Allowance), what was the outcome?
  • Awaiting a decision (10%, 59 Votes)
  • Placed in Support Group (14%, 78 Votes)
  • Placed in Work Related Activity Group (24%, 136 Votes)
  • Refused - successful on appeal (7%, 40 Votes)
  • Refused - unsuccessful on appeal (7%, 41 Votes)
  • Refused - appeal in progress (11%, 63 Votes)
  • Refused - did not appeal (7%, 39 Votes)
  • Have not applied for ESA (20%, 112 Votes)

Once you get rid of the 30% who haven't had a decision or haven't applied, again it looks fairly standard for the time, although patterns in ESA have changed considerably since then. It might be worth asking @charles shepherd, who I'm sure gets plenty of anecdotal feedback.

 

[slysaint]

not stats but found this article in New Statesman it's a few years old:
"Sarah Davidson*, 43, was threatened with a sanction for being physically unable to do her assigned work activity. Sarah has ME and was awarded ESA on the basis of limited mobility and her inability to sit for more than an hour.

Despite having a meeting with a personal advisor at Seetec, her Work Programme provider, where her inability to sit and concentrate for long periods were noted, Sarah’s now received a summons to an ‘employability programme’ that requires her to have four weeks of twice weekly work related activity lasting over three hours.

“My support worker called and explained I could not do this programme because of my disability,”
she tells me. “They were very rude apparently, refused to take my health condition into consideration, and said they would be reporting me to DWP for failing to participate.”
In fact, when the programme was due to start two weeks ago Sarah had a flare up of her condition and was physically unable to leave her home all week. Job Centre Plus is currently considering whether to sanction her for non-attendance."

 

[slysaint]

I've just watched the 'Voices from the Shadows' trailer again and the trailer from Panoramas 'I helped my daughter die'
and just wondered if you could get a mention of either in your piece. As discussed on another thread it is such a shame that Voices was never aired on TV and now you can only rent it online..........but who other than other ME sufferers would do that. If you only mentioned that anyone who doesn't think this is a serious physical illness...just watch 'Voices from the Shadows', it says more than any statistics.

 

[slysaint]

Again this was published some years ago.....shows how little has changed(in this country anyway)

"
Sarah, 31, who was diagnosed with ME/CFS two years ago, says: "The stigma associated with the disease can sometimes be as much of a problem as the symptoms.

"Some think that it is 'all in the mind' and can be cured by a good night's sleep. It can be difficult to get friends and work colleagues to understand just how difficult it is to live with a disease that is so debilitating but virtually invisible."

Attitudes among funders of medical research also need to change, says Dr Neil Abbot, operations director at the charity ME Research UK. "Studies on the psychological aspects of ME/CFS seem to have vacuumed up attention and funding at the expense of hard-core biomedical studies," he says.

"Most of the £3 million spent by the Medical Research Council on the illness in the last six years has gone towards projects on the psychological management of the disease, while there is evidence that around 30 applications, some from established biomedical research groups, have not been funded."

The work carried out by Dr Kerr and his colleagues is funded by a small charity, the CFS Research Foundation, which was set up in 1993 by a group of doctors and scientists who were concerned about the direction and quality of work on the disease.

Its director, Anne Faulkner, is optimistic about the search for a cure: "We believe that this disease can and will be conquered, but it will need the dedicated work of distinguished research scientists and the determination of people in the community to bring this about."

 

[harveythecat]

okay - just to let you all know, this is still going to be published - but not til 26/27 of september (so will conincide with millions missing.) it's not as long as i would like but still happy with it! thanks again for your help.

 

[Deepwater]

maybe that though would give the wessely schoolers a good opportunity to get their own comment piece in though as a follow up due to their psych views and to state that most psychriastrist do believe in GET and CBT for this (article is going into an UK paper after all and they are bound to notice and respond in some way, I dont think they'd allow that to go unchallenged).
........

maybe it would be better to focus on things they cant challenge so much to not possibly give them a final word there eg some of the science which is being done currently or coming out or the lack of funding being put into such a terrible disease compared to other diseases.

How about our article pre-empts the "harassment" response by referring to the past use of this by the PACE authors and BPS school, and how the FOI tribunal, which investigated these allegations, found there had been no harassment other than a single PACE author having once been heckled at a meeting?