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

[Vasha]

Hi @harveythecat

I think one important challenge with PACE is that the BPS crowd has been very successful in portraying objections as an outsider or minority opinion - they love to compare any objections to climate-change denial etc.
So I think it would be very useful to really stress that the bulk of research and expert opinion is actually on our side at this point, for example could reference the letter from 40 experts challenging the PACE trial.

Perhaps a quote or two from a doctor or respected researcher on what is wrong with PACE and/or the challenges of pervasive misperceptions of the illness - maybe @Jonathan Edwards would be willing?

Thanks for doing this @harveythecat , I look forward to reading whatever you end up writing !

Hi @harveythecat -

I very much agree with @Kyla and @A.B. on general approach: positive discussion of the seriousness of the disease (per the IOM report etc), the promising direction new research is going, a call to address the woeful underfunding and neglect of the disease.

For my two cents, I'd avoid playing up PACE or controversy about what the disease is in favor of describing what the disease is, how serious it is, and what we need to do next. Some issues with highlighting PACE or a controversy in general (not that that is the plan! but if it were the effect) are:

-it gives the psych lobby's argument for them, even if described in negative terms. This is a classic advocacy mistake. The reader may never have been thinking it--but now is.
-It plays up uncertainty rather than progress and what is left to be done--no one likes to support something that is too uncertain
-it plays into the many, many "controversy" focused press pieces over the years that promulgate myths about difficult patients etc etc.

Again, that's two pennies only. Looking forward to see the piece!

Vasha

 

[daisybell]

I think that it would be good to ask why it is that the British media and public are so wedded to the psychological view of ME, when the evidence from abroad (IOM report, Stanford and Norwegian research, among others) is clearly pointing to physical disease. What is it about the psychological view of an illness such as ME, which is largely invisible to well folk, that is so appealing? Throw in the stat.org and David Tuller references if possible, and push the angle of harm being done to people with ME due to disbelief and doctors refusing to test and treat.

I wouldn't want to try to write it myself though as I think that it might be challenging for the reasons Vasha raises above...

 

[Esther12]

I'd much rather see some mainstream UK coverage of the problems with the PACE trial than anything else about CFS. I think that changing the narrative on this is key to improving the way patients are treated. I understand that a lot of patients might be sick of it by now, but for most British people, they've only heard one side of this story and don't realise that side is talking rubbish.

 

[Snowdrop]

Haven't read the comments but I'd say this is a message I'd want heard: cfs is not an illness it's merely fatigue that does not resolve. People with ME are tired of hearing about fatigue--there are many symptoms to ME and if there is fatigue it comes from disordered sleep issues. All pysch research has been on chronic fatigue not ME.

Good luck. Hope it goes well--thanks for attempting this on all our behalf.

 

[Snowdrop]

I think that it would be good to ask why it is that the British media and public are so wedded to the psychological view of ME, when the evidence from abroad (IOM report, Stanford and Norwegian research, among others) is clearly pointing to physical disease. What is it about the psychological view of an illness such as ME, which is largely invisible to well folk, that is so appealing? Throw in the stat.org and David Tuller references if possible, and push the angle of harm being done to people with ME due to disbelief and doctors refusing to test and treat.

I wouldn't want to try to write it myself though as I think that it might be challenging for the reasons Vasha raises above...

The problem with that one is that although correct--they don't perceive it that way. They think of it as bio/psycho/social. The bio is the precipitating illness which everyone else recovers from. This is disingenuous since the chronic part the actual illness ME is the psychosocial part but they don't distinguish. As this fails in the face of ongoing research they will still claim the psychosocial part needs to be dealt with. They cannot be reasoned with--they don't even make sense. To me the best thing is to lay out the truth/reality of what we know both from research but also experience.

 

[Seven7]

I think about when I knew nothing about CFS the one thing I wish somebody talked about was that there are tests that show abnormally like 2 day CPET, Cytikone profile, lymphocyte subset, Nk cell number and activities.

What patients need is to have something they can show for, so they get the support they need.

 

[panckage]

How about focus on the how poorly funded this illness is and then transition into Whitney Dafoe and how and how his father has had to collect donations to do research for his sons disease?

 

[harveythecat]

Thanks so much for your input everyone, it's so helpful and I'll deffo take these ideas into account.

One possible line of thought (not necessarily the whole article) is linking the PACE trial with the DWP, and the (scientifically flawed) biopsychosocial benefits system in the UK, ties to health insurance etc. based on some academic articles that have been shared on PR I believe. This would all be completely undermined by referencing the IOM report and new research etc. and asking why the UK/NHS/DWP continues to ignore better science, to the detriment of patients' health. I would like to reference Millions Missing and the role of patients in pushing for better science.

It's just very hard to say what will be most eye-opening for the general reader and how to funnel it into a readable narrative. At the end of the day, I will inevitably have to leave things out.

Also if anyone here would particularly like to give a quote please get in contact. This could be describing something about your personal experience with the illness, or your scientific opinion. etc.

Thanks again

 

[jodie100]

If discussing the PACE trial in detail I think it would be important to be clear on what the trial actually said versus how it has sometimes been misinterpreted by those critical of it. There are some clear answers to basic questions about it at http://www.wolfson.qmul.ac.uk/images/pdfs/pace/faq2.pdf, there are lots of valid criticisms about it, but to portray it as saying M.E. is a psychological illness or not genuinely disabling is a mischaracterisation of what it actually says and likely to further this misunderstanding of it. I think there is actually more of a problem with the ill-informed disrespectful way some doctors treat M.E. patients than with anything the PACE trial says, and also with the application of GET in an unsafe way by those not informed about how to apply it to M.E. patients.

 

[Bob]

If mentioning PACE it might be worth mentioning the 12,000 signature petition by patients calling for the retraction of claims made in the Lancet and other journals. And the letter from a number of leading scientists and clinicians calling for an independent reanalysis of the trial data.

 

[MeSci]

Thanks so much for your input everyone, it's so helpful and I'll deffo take these ideas into account.

One possible line of thought (not necessarily the whole article) is linking the PACE trial with the DWP, and the (scientifically flawed) biopsychosocial benefits system in the UK, ties to health insurance etc. based on some academic articles that have been shared on PR I believe. This would all be completely undermined by referencing the IOM report and new research etc. and asking why the UK/NHS/DWP continues to ignore better science, to the detriment of patients' health. I would like to reference Millions Missing and the role of patients in pushing for better science.

It's just very hard to say what will be most eye-opening for the general reader and how to funnel it into a readable narrative. At the end of the day, I will inevitably have to leave things out.

Also if anyone here would particularly like to give a quote please get in contact. This could be describing something about your personal experience with the illness, or your scientific opinion. etc.

Thanks again

As long as there is some good stuff from the UK, including on research.

 

[harveythecat]

As long as there is some good stuff from the UK, including on research.

Sorry what do you mean good stuff from the UK?

 

[MeSci]

Sorry what do you mean good stuff from the UK?

Sorry but I'm not very good at the moment, but stuff from @Jonathan Edwards would be good,

 

[user9876]

If discussing the PACE trial in detail I think it would be important to be clear on what the trial actually said versus how it has sometimes been misinterpreted by those critical of it. There are some clear answers to basic questions about it at http://www.wolfson.qmul.ac.uk/images/pdfs/pace/faq2.pdf, there are lots of valid criticisms about it, but to portray it as saying M.E. is a psychological illness or not genuinely disabling is a mischaracterisation of what it actually says and likely to further this misunderstanding of it. I think there is actually more of a problem with the ill-informed disrespectful way some doctors treat M.E. patients than with anything the PACE trial says, and also with the application of GET in an unsafe way by those not informed about how to apply it to M.E. patients.

The theory behind the CBT intervention is that patients malformed beliefs that they are sick perpetuate the disease. I take that to mean that they think that patient are ill because they caught a virus and then think they remain ill. GET is slightly different because here they propose people get deconditioned after an initial illness and 'misinterpret' signs of deconditioning as a continued illness - they then propose that patients push through this deconditioning. (Although they do admit this theory doesn't work in their mediation paper). So it seems to me that their theories and treatments are assuming ME is a psychological illness. I know at times when it is convenient to them they try to deny this but they have failed to square the circle and explain how their proposed treatments fit a non psychological or a non-deconditoning model.

Part of the problem with ill-informed and disrespectful doctors is the way PACE has been promoted for example with headlines suggesting a bit of exercise will make people better. Such headlines are a direct result of their press releases and press conferences that give misleading information about their results. But until they have really been challenged they have encouraged such headlines and for new stories to include bits labeling ME patients as violent harassers of researchers. Although with the latter they don't say this is for asking for the trial outcome data when they did outcome switching.

 

[BurnA]

it gives the psych lobby's argument for them, even if described in negative terms. This is a classic advocacy mistake. The reader may never have been thinking it--but now is.

This is thought provoking.

Are you saying we shouldn't mention PACE because it draws attention to it ?

Sorry if my understanding is wrong. Could you explain a bit more ? Tks.

 

[Esther12]

If discussing the PACE trial in detail I think it would be important to be clear on what the trial actually said versus how it has sometimes been misinterpreted by those critical of it. There are some clear answers to basic questions about it at http://www.wolfson.qmul.ac.uk/images/pdfs/pace/faq2.pdf, there are lots of valid criticisms about it, but to portray it as saying M.E. is a psychological illness or not genuinely disabling is a mischaracterisation of what it actually says and likely to further this misunderstanding of it. I think there is actually more of a problem with the ill-informed disrespectful way some doctors treat M.E. patients than with anything the PACE trial says, and also with the application of GET in an unsafe way by those not informed about how to apply it to M.E. patients.

It's important to get all the details right, and some patients might misunderstand some parts, but that FAQ is pure propaganda. The PACE team posing their own 'frequently asked' (by who?) questions to themselves so that that they can weasel out of engaging with the real problems with their work and the prejudices they have promoted.

 

[Seven7]

The problem is PACE is only known by the community and by plp that follow CFS, if you get any of our family members they have no idea what PACE is, all they know is my family member says it sick and I am not sure what is wrong with them. So it would be a challenge to teach something and discuss PACE under 700 words.

Would be awesome to give it to read to somebody that know nothing about CFS and see what they learn at the end of the article once you write it. Just a thought.

 

[Hip]

One possible line of thought (not necessarily the whole article) is linking the PACE trial with the DWP, and the (scientifically flawed) biopsychosocial benefits system in the UK, ties to health insurance etc.

I think an article detailing how the health insurance industry is pushing biopsychosocial model would be valuable.

Articles about ME/CFS are common, but you rarely see mainstream articles that detail how disability insurance companies are promoting the biopsychosocial model, which helps explain why bad science like PACE is created.

So an article examining how the health insurance industry connection to the biopsychosocial model would be interesting. In the article, the case of ME/CFS and the PACE trial can be used as an example of how bad science gets to be promoted when disability insurance companies are trying to save money, by making diseases look like they are "all in the mind".

Insurance companies are very active and organized in their promotion of the biopsychosocial perspective: for example, the UNUM Centre for Psychosocial Research at Cardiff University, Wales, was set up and paid for by the disability insurance company UNUM in 2004, at a cost of £1.6 million, to promote biopsychosocial views on illness.

Here is a 2007 BBC News article on how UNUM are advising the UK Department for Work and Pensions (responsible for welfare) on welfare benefit reform in the UK.


Some info on how the disability insurance companies are driving the biopsychosocial model is to be found here and here.

 

[Mark]

I'll quickly throw in my one suggestion: don't forget to ask for money. Highlight the low levels of government funding (and put that in context) and low level of research funding overall, explain that the level of government funding is to some extent driven by the level of private funding for research, and recommend some of the best organisations and charities for people to donate to, to fund research. We don't ask this nearly often enough; we should ask it every time we're talking to anyone, really. Politics aside, more money for research is ultimately the only thing that's going to get us anywhere.

 

[Comet]

Vasha said: ↑
it gives the psych lobby's argument for them, even if described in negative terms. This is a classic advocacy mistake. The reader may never have been thinking it--but now is.

This is thought provoking.

Are you saying we shouldn't mention PACE because it draws attention to it ?

Sorry if my understanding is wrong. Could you explain a bit more ? Tks.

This was what I had been thinking earlier when I first responded in this thread (not speaking for @Vasha , just thought her quote seemed to express what I was thinking).

But there are so many good ideas here. I love @Jonathan Edwards idea about we patients (well, you patients with functioning brain cells ) uncovering the bad science behind the PACE trial. Yet are still unfunded and disbelieved, etc.

Good luck with it and thank you!