FITNET: BMJ Article vs AYME Statement, both published 1 Nov 2016

[medfeb]

(Long post)
AYME and Professor Crawley are very clear on our position, we do think that ME/CFS is a biological condition and much research needs to be done to determine the exact cause and treatment. We do not support the hypothesis that ME/CFS is a psychological disorder. However, a complete understanding of ME/CFS may be decades away and we cannot allow nothing to be done for children and young people with ME/CFS in the meantime. There is promising research happening at the moment, but even if the exact cause is determined soon, it may take a long time for a treatment to be available.

The way in which Crawley defines her patients is guaranteed to
1) ensure that the cause of the disease is never found because its a non-sensical grouping of patients
2) ensure that at least some of the patients will benefit from the therapies she is pushing because her cohorts include such a range of unrelated conditions, allowing her to claim that she is helping "ME/CFS" patients

Her claim that one in 50 teens have CFS is based on a study of parent reported chronic fatigue. And the FITNET study uses the NICE criteria, which she defines to be 3 months of fatigue plus any one of a list of 9 symptoms. Exclusions are listed as "conditions that explain the fatigue" - it doesn't specify any psych conditions as exclusionary.

No way of knowing what these patients have. Her cohorts are clinically meaningless.

MEGA is using the NICE criteria? Will MEGA be using it in the same way that Crawley is using it in FITNET? Or will MEGA leave it up to each researcher to apply the NICE criteria however they want?

 

[aaron_c]

It seems like the majority will get better anyway, so for them it might be a big esteem boost! "I cured myself with the power of my mind... come on Cancer, you don't scare me!"

And then some of those kids become doctors, scientists, and journalists. And some of those professionals will spend their adult lives doing or reporting on bad science that "shows" that all sorts of stuff can be cured with the mind. Sometimes self esteem isn't a great thing.

 

[soti]

Research into CFS is difficult, partly because of a vocal minority who disparage any psychological treatment for the condition, insisting on a biological cause that would have been found long ago if research had been directed properly.

Aha. So "we don't believe it's a psychological illness" but oh that silly vocal minority who are "insisting on a biological cause".

 

[deleder2k]

I don't think so, as she says this....................

But the latter isn't a direct quote, or is it? Isn't that written by the author of the article? I do believe she thinks it though.

 

[dyfalbarhau]

I don't think their end-game is to be working in ME/CFS anyway. I think what they're aiming for is for ME/CFS to be reclassified as a different, biological illness, and for ME/CFS to become a psychological illness they can continue being the experts in. Crawley at least seems to realise the game has changed, so I wouldn't be surprised if she's trying to string along enough funding to find a group of people she can treat with much less controversy.

 

[Sean]

Crawley at least seems to realise the game has changed, so I wouldn't be surprised if she's trying to string along enough funding to find a group of people she can treat with much less controversy.

Pity about that track record of hers, which is not going to conveniently go away quietly.

 

[dyfalbarhau]

Pity about that track record of hers, which is not going to conveniently go away quietly.

I imagine what will happen then is, "Ah, well, those people who have [the biological disease formerly known as ME/CFS] did not actually have CFS, therefore those failures are to be expected. However, we are able to treat true CFS even better than we reported previously, because now we have a better cohort. Therefore my track record is excellent, especially since we were able to figure this out using my research." Or something.

 

[Ben H]

AYME and Professor Crawley are very clear on our position, we do think that ME/CFS is a biological condition and much research needs to be done to determine the exact cause and treatment. We do not support the hypothesis that ME/CFS is a psychological disorder. However, a complete understanding of ME/CFS may be decades away and we cannot allow nothing to be done for children and young people with ME/CFS in the meantime. There is promising research happening at the moment, but even if the exact cause is determined soon, it may take a long time for a treatment to be available.

(All statements my personal view)

One of the most rediculous, infuriating statements I have read.

1.) Yes, much research does need to be done...so START doing proper research. From what I have read this FITNET farse will not be available results wise until 5 years anyway so the mentioning of a complete understanding may be decades away is particularly sour when they are repeating an atrocious study that showed no difference between groups in LTFU. Also non objective measures as always. So the irony is that AYME are doing nothing for young people, and infact making matters even worse by supporting a study which is a total waste of funds.

2.) You don't always NEED a full understanding to effectively treat an illness. There are a ton of conditions which are treated, with success, without a full understanding.

3.) The 'promising research' AYME mention was disparaged by Crawley on the radio show so that does not add up. Two faced much?

4.) It may not take a long time to treat due to repurposing of existing drugs. See real scientists like Prof Ron Davis for an example of testing this imminently. It is certainly going to be a lot longer with AYME supporting studies like this.


Seriously. How thick do they think we are.


B

 

[AndyPR]

Seriously. How thick do they think we are?

But it's not us, the users of PR, that they are aiming these statements at, they are aiming them at the uninformed general public and larger patient population out there. So for us, their stories are full of holes and make no sense, for the majority of people it all sounds perfectly reasonable.

 

[Ben H]

But it's not us, the users of PR, that they are aiming these statements at, they are aiming them at the uninformed general public and larger patient population out there. So for us, their stories are full of holes and make no sense, for the majority of people it all sounds perfectly reasonable.

Yea, I realise this sad fact. Its one of our biggest issues My comment was just a throwaway, fustrated remark.


B