Peter White/Barts - comments on draft NICE guidelines - insight into their views

Incapacity benefit used to be the basic benefit for disability that led to inability to work.

Those with insufficient working tax credits would need to claim a means tested benefit - Incapacity benefit as it used to be.

Only those very disabled by ME could attempt to claim the extra money provided by DLA. It is a difficult benefit to get. You would need to be pretty much housebound.

6X more on IB than DLA sounds about right to me.

In the AfME/AYME survey published May 2008, these were the figures:

Thanks, that's really helpful.

A couple of caveats:
1. As with local groups, members of AfME and AYME are likely to be more severely affected than average
2. 21% had onset aged 17 or under and a further 14% were aged under 25 at onset; those under 17 won't be eligible for IB having never worked, and a good proportion of those under 25 eg students might never have worked, or not worked long enough at onset to qualify for IB.

Even so, I still think the survey results make the 6x figure unlikely.

Also, ME is predominantly a female illness and more women than men don't work, particularly because of child care (69% in that survey were aged 40 or under at onset), which would also be expected to reduce the proportion eligilbe to IB relative to DLA.

BACME conference 2012 - link to short report on Peter White's keynote speech

BACME conference 2012 - link to short report on Peter White's keynote speech:
http://forums.phoenixrising.me/show...-short-report-on-Peter-White-s-keynote-speech

PDW & co tend to make out that if GET done the right way, aka the way they do it in Barts, it is completely safe. Thus, this tweet is interesting.

@RichardCann76

The last thing we need to do, is to sling their own shit back at them. You can't fight psychobabble with psychobabble.

Dolphin,

Plus the comments that appeared (I think in the Guardian) online after PACE from participants

Barts use AFME feed to feed that propaganda that this treatment is safe when done "properly" in response to the patient surveys that show harm done.

White is staring another trial:

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=12053
GETSET
Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care

I think this has been reported before so doesn't warrant a new thread, but this is a proposal site with details. He specifically addresses advocacy opposition to his claims.

Peter White speaking at the Royal Society of Medicine in 2008.
He talks about these slides at around 26:30-27:30 in his presentation: http://www.rsm.ac.uk/academ/video.php

He has used the ME Essential slide (and probably the other slide - I have been paying less attention) in several other talks since then.

I've copied a transcript below

It is interesting that if he thinks ME is not incurable because of GET, why won't he publish the "recovery" outcome measure, one of the predefined secondary outcome measures, from the £5m PACE Trial.

http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po