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

Should the article discuss the PACE trial?

  • Yes - in depth

    Votes: 9 20.0%

  • Yes - briefly

    Votes: 20 44.4%

  • No

    Votes: 16 35.6%
  • Total voters
    45
J

JamBob

Senior Member
Messages
191
I think a negative campaigning strategy is harmful - it just looks like we are bitter and negative and trying to settle scores against psychiatry and will make the reader wonder if the psychiatrists are right (as we are all so bitter and negative - perhaps we just need some therapy). I believe there will be a time of reckoning in the future when we have a clear understanding of the pathology of the disease(s).

Plus you need to consider the health literacy levels of the readership. On PR we sit and analyse every article that comes out in fine detail and have an in-depth understanding of the controversy and details of the PACE trial. The average reader isn't going to be interested in this stuff at all and may well be turned off when the article starts going over this ground.

If it were me and I had a short article, I'd present the following:

1) We are a large, underserved patient population with a high level of unmet medical needs.
2) Our disease has been neglected for decades - the cause was a mystery to doctors.
3) Now due to personal circumstances (Ron Davis) or serendipity (Norway) or growing awareness, some of the top researchers in the world are showing an interest in our disease and have some very exciting preliminary results.
4) These researchers have lots of great ideas and plans but they are being held back due to lack of funding. Therefore we need more funding so that these researchers can find a biomarker/treatment and cure and help this population of patients.
 
Stewart

Stewart

Senior Member
Messages
291
@harveythecat

I realise I'm coming to this thread a bit late, and I hope you'll forgive me if this is a case of 'teaching granny to suck eggs', but you're not going to be able to cover a lot in 700 words. You need to work out what the single key message that you want to get across is - taking into account the likely readership of the newspaper you're writing for - and fashion the entire article to make that one point as powerfully as possible.

If I were writing the article - and obviously I'm not - I know what my key message for the UK public would be. "Regardless of what you may have heard ME/CFS is clearly a biological condition, and we're finally starting to make some progress towards understanding and treating it." The idea that ME/CFS is "all in the head" is widespread in the UK, so I'd want to use the article to try and puncture that notion. I would briefly explain how the psychiatrists' explanation has been discredited - by their own poor 2 and a half year follow-up results, the criticisms of other medical professionals and academics, and the IOM's definitive rejection of their position - and then cover some of the promising recent developments that are underway. Rituximab and the possible involvement of B-cells, Ron Davis' research into mitochondria and impared energy metabolism, Ian Lipkin's recent statement that the mystery of ME/CFS could be solved in the next 3-5 years, if funding is made available, Dr Nath's study and the work the NIH is doing to ramp up funding for research projects. I'd finish by expressing disappointment that so little of this vital work is being done in the UK, and express hope that we might finally see this change in the years ahead - UK ME/CFS patients deserve better than they're getting at present.

That would be my article - but you may well have a different key message that want to get across. Whatever it is, focus on making that one point as strongly and convincingly as you can. Don't try and cover everything that you feel needs to be said about ME/CFS - you'd need a lot more than 700 words to do it all justice. Focus on making one point, and making it well.
 
Esther12

Esther12

Senior Member
Messages
13,774
JamBob said:
1) We are a large, underserved patient population with a high level of unmet medical needs.
2) Our disease has been neglected for decades - the cause was a mystery to doctors.
3) Now due to personal circumstances (Ron Davis) or serendipity (Norway) or growing awareness, some of the top researchers in the world are showing an interest in our disease and have some very exciting preliminary results.
4) These researchers have lots of great ideas and plans but they are being held back due to lack of funding. Therefore we need more funding so that these researchers can find a biomarker/treatment and cure and help this population of patients.
Click to expand...

I think that approach would, if it has an influence, be very likely to lead to more CBT/GET to help care for patients and more funding for Esther Crawley to do research. I think that we do need to break from the past, and that it is important to explain that it's reasonable to be bitter and negative about the quackery and poor quality research that has come to surround ME/CFS, rather than just play along with the assumption that this response is delegitimising of patient's concerns.

Not all readers will feel able to take in the details of a PACE critique, but those whose views really matter to us will. This recent article from Keith Laws is a good example of discussing the evidence in a clear and simple manner imo: https://www.theguardian.com/science...ychological-therapy-cbt-overstepping-evidence

harveythecat said:
Hi @Stewart thanks so much for that. Do you happen to have a link for a good source that shows that the 2 and a half year follow up showed v poor results?
Click to expand...

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/abstract

There's correspondance linked to at the side too.
 
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J

JamBob

Senior Member
Messages
191
Esther12 said:
Not all readers will feel able to take in the details of a PACE critique, but those whose views really matter to us will. This recent article from Keith Laws is a good example of discussing the evidence in a clear and simple manner imo: https://www.theguardian.com/science...ychological-therapy-cbt-overstepping-evidence
Click to expand...


While that's a good article - it features in the science section and seems to be preaching to the converted - half the replies are from people on this website. We already know about PACE and the controversies. Most of the public aren't interested in the trial.

The proposed article is a chance to reframe how the disease is presented to the public - as a biomedical mystery now finally being tackled by biomedical researchers. I'm not sure why you think that highlighting Ron Davis' and Norway's work would lead to more funding for CBT - if anything, hearing about cutting edge research overseas is more likely to spark interest in new biomedical researchers.

If the article will be in the science section where the audience will be skeptics, then by all means go for a PACE takedown. But if the article is in the health section and intended for communicating with the general public, we should move away from the negativity of PACE and start headlining the kind of exciting biomedical research we want funded for our disease.
 
Esther12

Esther12

Senior Member
Messages
13,774
JamBob said:
The proposed article is a chance to reframe how the disease is presented to the public - as a biomedical mystery now finally being tackled by biomedical researchers.
Click to expand...

I don't think that we've done the ground work to enable a successful re-framing in that way, and just trying to present ME as a 'biomedical mystery' without going in to the details can also play into the anti-psych prejudice meme.

JamBob said:
I'm not sure why you think that highlighting Ron Davis' and Norway's work would lead to more funding for CBT - if anything, hearing about cutting edge research overseas is more likely to spark interest in new biomedical researchers.
Click to expand...

I think that highlighting the "underserved patient population with a high level of unmet medical needs" can lead to a response of 'here's some evidence-based care for you then', and that's not great when we've failed to explain why it's misleading to present CBT/GET as evidence-based care.

JamBob said:
If the article will be in the science section where the audience will be skeptics, then by all means go for a PACE takedown. But if the article is in the health section and intended for communicating with the general public, we should move away from the negativity of PACE and start headlining the kind of exciting biomedical research we want funded for our disease.
Click to expand...

I can see your point, but I don't think that the biomedical research is yet solid enough to really focus on in a health section either. The criticisms of PACE are solid, important and yet still unacknolwedged by many of the people who matter.
 
Vasha

Vasha

Senior Member
Messages
119
JamBob said:
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).
Click to expand...

This is an excellent description of the phenomenon, @JamBob.
 
Vasha

Vasha

Senior Member
Messages
119
lnester7 said:
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.
Click to expand...

I also want to plug @Inester7 idea here--@harveythecat 's piece is so short, it might not fit but for future reference.

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
 
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B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
JamBob said:
If it were me and I had a short article, I'd present the following:

1) We are a large, underserved patient population with a high level of unmet medical needs.
2) Our disease has been neglected for decades - the cause was a mystery to doctors.
3) Now due to personal circumstances (Ron Davis) or serendipity (Norway) or growing awareness, some of the top researchers in the world are showing an interest in our disease and have some very exciting preliminary results.
4) These researchers have lots of great ideas and plans but they are being held back due to lack of funding. Therefore we need more funding so that these researchers can find a biomarker/treatment and cure and help this population of patients.
Click to expand...
As it's such a very short article, I quite like this approach. But it's not my article.
 
BurnA

BurnA

Senior Member
Messages
2,087
JamBob said:
I think a negative campaigning strategy is harmful - it just looks like we are bitter and negative and trying to settle scores against psychiatry and will make the reader wonder if the psychiatrists are right (as we are all so bitter and negative - perhaps we just need some therapy). I believe there will be a time of reckoning in the future when we have a clear understanding of the pathology of the disease(s).
Click to expand...

I don't think there is anything bitter or nagative about pointing out the truth.

Were David Tuller, Rebecca Goldin and Maureen Hansen bitter and negative ?
 
harveythecat

harveythecat

Messages
78
Location
Manchester, UK
A.B. said:
Why not both the recent positive developments and the story about patients fighting against bad science?

Something like this

Hope for ME/CFS patients
- IOM report vindicates patients who always said this was a debilitating physical illness, calls for more research.
- Academics agree with patiens, PACE trial (representing psychosocial paradigmn to ME/CFS) fatally flawed. This approach is a failure.
- NIH answers the call, aims for $250 million funding (41 fold increase) and centers of excellence.
- ME/CFS on the way to become main stream research, researchers presented findings during IIME conference. Rituximab results are particularly promising.
- Patients finally have realistic hope.
Click to expand...


Hi - please can you tell me where the 250 million dollar figure comes from? many thanks
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
harveythecat said:
Hi - please can you tell me where the 250 million dollar figure comes from? many thanks
Click to expand...
harveythecat said:
I know that's what is being asked by Millions Missing etc. - have they officially agreed to it?
Click to expand...
Vicky Whittemore expressed a personal opinion at the IiME conference about the patient community's call for $250m. It's not an official NIH position. I'll see if I can find the quote.

Edit: here's the info:
http://forums.phoenixrising.me/inde...-friday-3-june-2016.44973/page-11#post-731902
 
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B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@harveythecat, here's the info:
http://forums.phoenixrising.me/inde...-friday-3-june-2016.44973/page-11#post-731902

Dr Whittemore said:
[...] here is what I think I said: “The patient advocates in the USA would like NIH to fund $250 million in research grants on ME/CFS. It won’t be possible to get to that figure right away, but we can build the research funded by NIH to hopefully eventually get to that figure.” (or something along those lines).

This is not an official statement from NIH, but is the request from the patient advocacy community. There is certainly enough research to be done, including clinical trials, to eventually get to that level of funding, but we will need to build our efforts to get there.
Click to expand...
 
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