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

[Bob]

but to portray it [PACE] as saying M.E. is a psychological illness or not genuinely disabling is a mischaracterisation of what it actually says

The psych lobby are too canny to directly describe ME/CFS as a psychological (or imagined) disorder, because they know it offends patients. But actions speak louder that words. And you're right that the PACE literature doesn't directly state that ME/CFS is a psychological disorder. But the whole study was set up on the premise that it CFS a non-existent illness with imagined symptoms (i.e. unhelpful illness beliefs) or is purely a case of de-conditioning. Read the therapist manuals for the details.

Apologies if I'm taking the thread off-topic but some facts needed correcting.

 

[Vasha]

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.

Hi @BurnA -

Something like that - but a little more. Most readers will (I assume) not have heard of PACE and will likely have no more than a vague idea of what ME is. It's a rhetorical "rule" that bringing up any fact or contested fact will cause the reader to consider it, and could cast doubt--lawyers learn, for example, "never make the other side's argument" by trying to debunk it (in certain situations--other times it is necessary to pull the argument apart piece by piece).

So, if the psych model and/or PACE are mentioned--even in a negative light, as flawed models that are harmful to patients--the reader automatically tends to think in "sides," and begins to give weight to both. This happened with health debates around tobacco and sugar in the States-- "teach the controversy" is wholly intended to give the reader/listener the idea that
1. there IS a controversy; and
2. the "sides" are equal in weight at least. You don't have to actually say that for people to automatically react that way... and then without meaning to, you've called into question your positive facts.

Spin doctors use "teach to controversy" to try to make sure that there is never certainty that tobacco/sugar is bad for you, that climate change is a danger, etc.

This is an issue so often in pieces about ME, because themes that "it is controversial" and "we don't know what it is" are what reporters have used over and over for years. There may be lots of good information in the article, but readers are overall left with the feeling "but it's controversial."

The psych lobby always talk about controversy, and never mention biomedical research. They just ignore it, so the reader doesn't have that doubt arise.

Of course, truth-telling about PACE and the psych model is also important! Here, I was thinking of the 700-word limit, and the general audience, which leads me to think the more positive approach would be effective.

However, I found your very different approach quite compelling too -- calling it out is also tempting. I'm just not sure we're at a place of public understanding where there would be outrage in response. Maybe it would just be confusion, and play into the "controversy made up by angry and unstable patients" narrative.

@Esther12 also makes a good point, though--I'm not British, so could be missing where the public are there.

In any case, thanks to @harveythecat for doing this! Whatever resonates with you will be the best approach for your piece, of course.

-Vasha

 

[Snow Leopard]

I was going to try to explain why mentioning PACE will backfire, but it seems @Vasha has already written an excellent explanation.

 

[Sean]

The long term follow up that was published last year was for around 2.5 years. I believe they are collecting data (or should have collected) for a 5 year follow up. They finished collecting data for the main paper (12 month follow up in March 2010) so they should have finished collecting the 5 year follow up data some time ago.

Doing the 5 year follow-up seems pointless, given they have stuffed the randomisation.

 

[worldbackwards]

Doing the 5 year follow-up seems pointless, given they have stuffed the randomisation.

You're forgetting the inevitable media blitz. Never miss an opportunity.

 

[harveythecat]

@harveythecat

I am thinking something like this - just as a quick thought.

Whatever its cause, ME/CFS is a devastating illness and we have no clue what it is due to. Psychiatrists have claimed they have a theory that it is supported by effective treatment, but it has become clear that there is no coherent theory and the evidence on treatment is poor. The five year follow up report suggests the treatment has no noticeable effect. Fortunately, physicians in other specialities are beginning to see ME/CFS as the big new challenge in understanding mechanisms of chronic disease, whether in the brain or the immune system.

Hi @Jonathan Edwards can I quote you on the following: 'Psychiatrists have claimed they have a theory that it is supported by effective treatment, but it has become clear that there is no coherent theory and the evidence on treatment is poor.' ?

 

[Jonathan Edwards]

Hi @Jonathan Edwards can I quote you on the following: 'Psychiatrists have claimed they have a theory that it is supported by effective treatment, but it has become clear that there is no coherent theory and the evidence on treatment is poor.' ?

Certainly.

 

[JamBob]

Why even mention PACE and psychiatry - every time CFS/ME and psychiatry are mentioned in the same article, we plant the seeds in people's mind that the two are related. Readers will either think "no smoke without fire" or "this writer doth protest too much" or worse - this writer is stigmatising mental health.

The same happens in the press with diabetes and obesity - you never see an article about diabetes without mention of obesity - then the public can't think about diabetes without linking it to obesity.

If it were me I would focus on all the burgeoning new research that is going on like Norway, Ron Davis etc. and go on the new breakthroughs and the need for more funding and better support for patients.

Psychiatry should be irrelevant to CFS/ME and we need our narrative to reflect that fact (by not constantly mentioning psychiatry).

 

[GreyOwl]

Hi @BurnA -
The psych lobby always talk about controversy, and never mention biomedical research. They just ignore it, so the reader doesn't have that doubt arise.

I read the talk page of wikipedia's CFS page recently and I noticed the way In Vitro Infidelium single-handedly felled the arguments of two stalwart editors. My heart literally swooned! The way he did not mention the psych lobby, except to say that they are the only group who consider ME/CFS "controversial" and that they aren't even representative of all of the U.K., "It's just a parochial (by sub specialism, by health provider, by country (England not even whole of the UK)variance in medical opinion...", was just so damn attractive... Anyway, I thought that was a good approach.

Here is the page: https://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome

Here is my favourite comedy line: "I'm not sure how mitochondrial dysfunction could really make sense for CFS, as it would presumably result in permanent fatigue rather than post-exertional fatigue. --sciencewatcher (talk) 00:50, 28 May 2016 (UTC)". *snigger*

 

[Esther12]

Why even mention PACE and psychiatry - every time CFS/ME and psychiatry are mentioned in the same article, we plant the seeds in people's mind that the two are related.

I don't know where you're based, but in the UK seeds have been planted, forests grown... time to start pruning imo.

 

[A.B.]

This is supposedly the homepage of the person with the nickname sciencewatcher on Wikipedia:

http://www.mind-body-health.net/overview.shtml

"Persistent burnout theory of chronic fatigue syndrome"
"Power of the Placebo Effect" complete with anecdotes about tumors melting like snow when given an ineffective medication, only to return when the person came to know the medication was ineffective.

He also argued that stress causes autoimmune disease.

With friends like these (taking care of the Wikipedia CFS article), who needs enemies?

 

[Solstice]

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

Agreed on this to be honest. Focus should be on the wonderful things that are done for us by certain people. We need to get the message across that it's a real disease, that some wonderful work is being done by good scientists and that those people need funding. That should be the emphasis, instead of getting into a right/wrong argument/fight again.

 

[harveythecat]

Certainly.

Great - how would you like to be described? 'Emeritus Professor of Connective Tissue Medicine at University College London (UCL)' ?

 

[GreyOwl]

@A.B., you misunderstood. In Vitro Infidelium is the friend watching the CFS page.

The quote by sw was just for laughs.

 

[Esther12]

Thanks to everyone involved in trying to restrain the quackery and prejudice from people like sciencewatcher on wikipedia. Looks painfully frustrating to me, but is a really important task.

 

[JamBob]

I don't know where you're based, but in the UK seeds have been planted, forests grown... time to start pruning imo.

I'm in the UK. I'd say the average person doesn't know much about ME/CFS and probably isn't interested in the intricacies of the battle against the PACE trial.

Any article banging on about psychiatry tends to attract the "these patients are just scared of the stigma of mental health diagnoses, there's no smoke without fire" types - so why even mention PACE and psychiatry when we have so much other biomedical research we can talk about? Most people can relate to a human story which is why the Ron Davis story is very powerful.

We should take ownership of the narrative and stop handing free publicity to psychiatry.

 

[A.B.]

Maybe as an experiment the article should just avoid any mention of psychiatry or PACE, and just sum up the exciting developments of the last few years. Just to try something new. Articles usually have something to say about the matter. Try just ignoring it completely and see how it goes.

 

[Esther12]

Any article banging on about psychiatry tends to attract the "these patients are just scared of the stigma of mental health diagnoses, there's no smoke without fire" types - so why even mention PACE and psychiatry when we have so much other biomedical research we can talk about? Most people can relate to a human story which is why the Ron Davis story is very powerful.

It is important to be careful about how things are phrased but:

1) I think that the PACE researchers have behaved appallingly, and that they have got away with this for so long is shameful. This is an important story with implication beyond just ME/CFS that should be told. ithin British society there is always a lot of pressure to turn away from these sort of things and not make a fuss... I think that progress only comes when people are willing to make a fuss.

2) Lots of medical staff and patients are being misled about the efficacy of CBT/GET. This is distorting so many people lives and their decisions about how to treat their health problems. There needs to be an effort to correct this.

3) The mislealding claims about the value of CBT/GET are also distorting funding decisions and leading to more limited resources being put into largely worthless research. Increasing awareness of this, and making it clear that those responsible for these funding decisions are behaving incompetently can lead to more useful research in the future.

4) The notion the patients have been unreasonable and anti-science because of their concern and opposition to things like the PACE trial is a widespread and harmful prejudice, and causes us further problems for all of the above. It should be corrected.

5) Most people do relate to personal stories and anecdotes... but we've seen the harm this has done over the years in the UK media. One can select an anecdote to show almost anything. I don't think that putting anecdote against anecdote will do much to bring about real change in the UK.

 

[Esther12]

Maybe as an experiment the article should just avoid any mention of psychiatry or PACE, and just sum up the exciting developments of the last few years.

But when have we had any mainstream UK article detailing the problems with and misrepresentations from the PACE trial? Ever?

 

[A.B.]

But when have we had any mainstream UK article detailing the problems with and misrepresentations from the PACE trial? Ever?

Good point. Maybe that's a chance to speak freely? I don't know what to think. It's all complicated.