Peter White's new GET trial

Jenny

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It would seem that Peter White, at Barts Hospital London, has applied for funding for a new GET trial. He has asked my local ME support group for 'input' into this.

I'm not sure what's meant by 'input'.

Does anyone know anything about where he's applying for funding for this?

Jenny
 

Sasha

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If I were asked for feedback from someone wanting to do a GET trial, I'd tell them to get (no pun intended) out of the way and not to take up funding that should be spent on biomedical research.

In the context we're in, I think asking for input simply within the confines of one's own trial ("Is this bit right? Is that bit right?") is unethical. The question should be, "Is the trial I want to do a research priority for ME, given that funding is limited?"

Sorry to rant, and I know I'm preaching to the choir!
 

busybee

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It would seem that Peter White, at Barts Hospital London, has applied for funding for a new GET trial. He has asked my local ME support group for 'input' into this.

I'm not sure what's meant by 'input'.

Does anyone know anything about where he's applying for funding for this?

Jenny
Could someone suggest a study similar to Staci Stephens work? Might start them heading in the right direction!
 

George

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I really don't get it (head scratch) Do they live in a vacuum??? It's weird maybe it just hasn't "flowed" out of the ME/CFS community yet. But it seems like they should be at least marginally aware of prior biomedical research and the new research by the Lights, Marshall and a couple of others. Plus, after doing research on GET for 20 years what's left to research why are they still milking the same cow? Do they think they are going to get some great new insite???hmmmh
 
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Surely the weasel's milch cow has got to be milked dry some time? It's been milked since 1987.
 

ukxmrv

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That's really interesting Jenny,

The results for the PACE trial haven't been reported yet but he is after more money?

Has he mentioned that to your group?

PW did say that he would report on the PACE trial if it was ready by their "birthday party" on the 29th November

I'm really interested to hear that he is after more funding.....

The last huge squandered millions came from the MRC and I wonder if it is them again?
 

Dolphin

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It would seem that Peter White, at Barts Hospital London, has applied for funding for a new GET trial. He has asked my local ME support group for 'input' into this.

I'm not sure what's meant by 'input'.

Does anyone know anything about where he's applying for funding for this?

Jenny
Action for M.E. wrote a letter of support for the PACE Trial when they were looking for money from the MRC. Getting patient groups to support an application can help get the money. I very much doubt you would get much proper input.

Peter White goes around saying GET is safe. He is basically a "one-trick pony" who will want GET to come out well.

For anyone who doesn't know him, follow one of the links in my sig.

GET and CBT based on GET/GAT have got a disproportionate amount of money already. Other treatments such as drugs can't "compete" with them so it's easy to say that they are not "evidence based". More studies just make this worse.
 

Jenny

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That's really interesting Jenny,

The results for the PACE trial haven't been reported yet but he is after more money?

Has he mentioned that to your group?

PW did say that he would report on the PACE trial if it was ready by their "birthday party" on the 29th November

I'm really interested to hear that he is after more funding.....

The last huge squandered millions came from the MRC and I wonder if it is them again?
Hi ukxmrv - All I know is he's told the group that he wants more funding and he's asked the group for 'input'. I'm trying to find out more.

Jenny
 

Dolphin

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Hi ukxmrv - All I know is he's told the group that he wants more funding and he's asked the group for 'input'. I'm trying to find out more.

Jenny
Some input for what it is worth:

Trial should use objective outcome measures. At the very least pedometers/actometers as a primary outcome measure.
But results of blood test or other tests would be good.

Measure more symptoms than fatigue as primary outcome measures.

Use the Canadian criteria or at the very least the Fukuda criteria as the entry criteria. Not the Oxford criteria. Don't let him say the Canadian criteria can't be used for research - see this reference:
The Development of a Revised Canadian Myalgic
Encephalomyelitis-Chronic Fatigue Syndrome Case Definition

http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf

1Leonard A. Jason, 1Meredyth Evans, 1Nicole Porter, 1Molly Brown,
1Abigail Brown, 1Jessica Hunnell, 1Valerie Anderson, 1Athena Lerch,
2Kenny De Meirleir and 3Fred Friedberg

1Department of Psychology, DePaul University, Center for Community
Research, Chicago, Il, 60614, USA
2Department of Physical Education and Physical Therapy, Vrije
Universiteit Brussel, Belgium
3Department of Psychiatry and Behavioral Science, State University of
New York at Stony Brook, USA

Corresponding Author: Leonard A. Jason, Department of Psychology,
DePaul University, Center for Community Research,
Chicago, Il, 60614, USA Tel: 773-325-2018 Fax: 773-325-4923

American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010
ISSN 1553-3468
2010 Science Publications

Abstract:

Problem statement: Several investigators have indicated that case
definitions for Chronic Fatigue Syndrome (CFS) are characterized by
vaguely worded criteria that lack operational definitions and
guidelines. The most widely used CFS case definition is the Fukuda et
al. criteria, which uses polythetic criteria (i.e., patients are only
required to have four out of a possible eight symptoms). Yet two of
these eight symptoms (post-exertional malaise and memory/concentration
problems) are an essential feature of this illness and the Fukuda et
al. criteria do not require that these symptoms be present among all
patients. Significant methodological problems could occur if
investigators in different settings recruit samples with different
percentages of these core symptoms. In contrast, the Canadian clinical
case definition does require specific ME/CFS symptoms such as
post-exertional malaise and memory/concentration problems. The
provision of operationally explicit, objective criteria on specific
key symptoms might reduce criterion variance as a source of
unreliability. In addition, the use of structured interview schedules
will ensure that symptoms are assessed in a consistent way across
settings.

Conclusion/Recommendations: In this article, we specified explicit
rules for determining whether critical symptoms meet ME/CFS criteria
using a revised Canadian case definition and a questionnaire has been
developed to assess core symptoms. It is hoped that these developments
will lead to increased reliability of this revised Canadian case
definition as well as more frequent use of these criteria by
investigators.
 
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Peter White has close ties to the insurance companies.Bart's very close to the City.UNUM apparently is the US insurance company that is forcing the long ill to work in the UK.
Rumour on the block is that UNUM funded the Imperial College research, which was managed by Simon Wessley.

However as White has just written a paper saying that we are mentally ill, he may also be trying to swing the psychriatic angle.Hey, ask the local group to ask White!! Have a chat, maybe you represent the group for this purpose.

Roisin
 

Sasha

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I really don't get it (head scratch) Do they live in a vacuum??? It's weird maybe it just hasn't "flowed" out of the ME/CFS community yet. But it seems like they should be at least marginally aware of prior biomedical research and the new research by the Lights, Marshall and a couple of others. Plus, after doing research on GET for 20 years what's left to research why are they still milking the same cow? Do they think they are going to get some great new insite???hmmmh
Exactly - I think it's time that patients boycotted this kind of trial. Any research money should be spent on biomedical research.
 

pictureofhealth

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Hi Jenny, I think its fair to say that PW doesn't know any other way to make a living for himself. Universal acceptance of XMRV and a biomedical model would hit him very hard. Unfortunately he is somehow part of the MRC group that decides ME/CFS research priorities (short, medium and long term). The group also includes LP for children E Crawley. Dr Shepherd and Dr Holgate are also part of this panel and are in favour of biomedical research, but so far their deliberations have taken 2 years, with v little to show for the time spent. How can it take 2 years to decide that we need more biomedical research and fund it? Any patient could tell the MRC what the biomedical funding priorities need to be.

Perhaps your ME patient group could ask PW to provide data initially as to how many patients have actually been rehabilitated back to work with his (expensive) model and whether there has been, in fact, any patient follow up at the 6 month to a year mark at all, in any of the studies, to see how patients are doing after his interventions? Is he aware of the research showing that excercise reduces blood flow in the brain/brain stem during excercise in ME patients, which is most probably designed as a protective measure to prevent damage to the brain/heart, (where increased flow would be damaging to the physiology), ie the opposite of healthy patients where blood flow increases? Show him the research paper (I'll bet he's seen it already). Hardly ethical to encourage ME patients to exercise or increase activity beyond their physical capacity in those circumstances, is it?

Also, it might help to be aware that in order to avoid the adverse sounding connotations of 'exercise' with ME patients, that some researchers are now claiming that this is simply in fact, 'graded activity', which is designed to sound much less harmful. But the fact is, as we all know, that if we do any 'activity', let alone 'exercise', beyond our capabilities, we do get more pain, more exhaustion, more inflammation, more symptoms, ie more ill. These are measurable biological responses.

Until we have the figures from PW as to how many ME patients have gone back to work having partipated in his previous studies (I think we'll find most got worse, dropped out at some stage of the study, became more disabled - ie went from 'managing' to homebound, or are now bedbound), I don't think any ME patient would be interested in a repeat performance.

I think we've had adequate time to assess the impact of the 'benefits' of GET and we're not impressed. Its time for him to move on.
 
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His research is all into mild psychological fatigue - he does not research people with neurological M.E., or his beloved GET & CBT would prove to be harmful and ineffective respectively.
 

maryb

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The problem Min is we are all lumped together with one diagnosis , he'd probably run a mile if he ever met a really sick ME patient.:)
 

ukxmrv

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The Camberwell group in London appears to be one with Barts patients and supporters. I remember talking to a member of that group. They have hosted talks by staff at Barts and sympathisers. I once once told by this group member that they found CBT at Barts to be excellent.

We also have Colin Barton (Sussex) as a Barts supporter. Note the plug for the Lighning process on this page

http://www.measussex.org.uk/Main/south-east-medical-conference.html

==========

This is a big problem in the UK, we have pockets of the country where patients own supposed group are controlled by these people.
 

Uno

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You've hit the nail on the head there UKXMRV...there just seems to be no escape. I was part of the Sussex M.E Clinic but before I could be a part of their 'GET' program, I was discharged as they 'do not treat people with POTS'. I really think the time has come where biomedical research really is the only obvious way but when these people are blocking it, what to do. Definitely put what PictureofHealth has said to Peter White, I'd love to hear his response. Sadly until the dustbin diagnosis of CFS is long and forgotton and neurological M.E has proper diagnostic markers and criteria then these are the sorts of hogwash treatments the NHS will deem acceptable.
 

wdb

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Also it needs to include a well designed placebo control group that involves a comparable experience for the subjects. Any trial for a pharmaceutical treatment would be laughed at without a placebo control but for some reason many researchers trialling non-pharmaceutical treatments seem to think they needn't bother. What is crucial is not weather it is effective but weather it is more effective than placebo. Even better also include a pacing treatment group.
 

Dolphin

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Studies should try to have some longer term patients and look at their results separately. See what happens to patients who have been diagnosed at least a few years. It's not that hard to improve things for patients who are only newly sick or diagnosed - they might have improved eventually anyway (GET might just have speeded it up for some - a more cautious might just get you the same result less quickly but have fewer risks). But the claim is that GET can get people back to work, etc so they should test if this really works on more chronic patients.