NICE Timing, Coincidence and 'CFS/ME'.

NICE Timing, Coincidence and 'CFS/ME'.

Dear All,

I am a registered patient/activist stakeholder for the NICE 'CFS/ME' Clinical Guideline 53 (CG53) that was published in the UK in August 2007. The scheduled 3-yearly review was somewhat delayed by NICE. I have today however, 24 December 2010, at 0.30 am on Christmas Eve no less, received notification of their review decision in the following direct email from NICE. I should just add that, on the matter of the timing of such publication, it is reassuring to know, is it not, that British Taxpayers get such great value from our NICE civil servants - who are apparently willing to work all hours and put the welfare of 'CFS/ME' patients above their need to attend to personal pressing matters such preparing one's family Christmas or even their own need for sleep?

NICE's said email to me:

"Subject: NICE: NICE Alerts
Date: 24 Dec 2010 00:30:01 +0000
NICE Alerts
Bringing you the latest news, features and guidance advice from NICE
24 December 2010
Guidance by topic
the following guidance topics matching your health area preferences have been published or updated...
Chronic fatigue syndrome / Myalgic encephalomyelitis
[ ]."

A click on the jolly old link in the NICE email brings you to the following information on their web page:

"Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management...
Guideline review
Consultation on review proposal with stakeholders: 01 November 2010 - 14 November 2010
Review decision date: December 2010
Review decision:
During the public consultation on NICEs review proposal for clinical guideline 53 on the diagnosis and management of CFS/ME, a number of stakeholders advised that the results of the PACE Trial are due to be published in 2011. As this significant trial may affect NICEs final decision regarding whether its existing guideline warrants an update, NICE is deferring its announcement until further information is available. This is so that the conclusions made by NICE are as accurate and informed as possible. In the interests of high quality patient care, it is important that health professionals continue to adhere to the existing recommendations as they represent best clinical practice for the NHS [ ]."

Prior to this announcement, and surprisingly, even before they had received submissions from stakeholders on the matter during a very short-lived consultation period of 1st to 14th November 2010, NICE Guideline Development Group (GDG) members had announced that in their view there was no need to update CG53 at all. Now I know what all you readers are thinking, obviously those diligent folk at NICE not only serve patients and taxpayers exceptionally well through hard work at all hours, they provide clairvoyancy services as well and had precognition that stakeholders would not wish to have CG53 revised either...

Alas no. I can assure you, NICE's actions came as something of a shock to myself and other patient/ charity stakeholders as not only did we agree with leading interested parties that CG53 was "not fit for purpose" in the first place, we most certainly did know that there was good scientific evidence showing it was even more unfit for purpose now than when it was published. This in fact supported the case for urgent and very radical revision. Moreover, we provided evidence that the previous GDG membership may not have been collectively professionally competent to carry out their role in accordance with a) NICE's own Guideline Development Manual, and b) the European Union's 'AGREE Instrument' which, along with the WHO, attempts to maintain minimum international standards for clinical guideline development. We subsequently set about formally drawing NICE's attention to that very evidence and reasoning. See for example the EAME / 25% ME Group Stakeholder Responses to NICE at: NICE Stakeholder ProForma - Nov 2010.pdf

Well I know what you are thinking now, "there's nowt as queer as folk", as they say in Yorkshire (England): one minute those NICE people say nothing is wrong with Guideline 53 and the next they seem to be saying they may need to tweak it because "a number of stakeholders advised that the results of the (equally tweaked - see below) PACE Trial are due to be published in 2011." Ooooooo, I would just love to meet those stakeholders! They too must be blessed with some form of clairvoyancy because that there PACE Trial publication is soooo long overdue (years) I'm amazed that anyone can actually know when it is likely to be published! Perhaps one thing's for sure, if said stakeholders' clairvoyancy talents are a reality, then the fact that the PACE results "are due to be published in 2011" will at least mean those poor taxpayer-salaried PACE Principle Investigators will not be burning the midnight-oil rushing the results out on the eve of another public holiday - New Year's Eve?

It is interesting that NICE refer to PACE as "this significant trial". It is indeed very significant, but I wager not quite for the reasons they hold? PACE is funded by a UK government agencies that are responsible for spending taxpayers' money wisely, for upholding scientific standards and for caring for seriously ill people. The most outstanding reason the PACE Trial is perhaps "significant" however is because it has been alleged to be pregnant with "scientific fraud" and is the subject of multiple complaints, including a major formal erudite critique by Professor Malcolm Hooper - details of which can be read by following the paper-trail at these web-links:

Back to the question of timing more generally. It's a funny old thing you know? There's far too much conspiracy theory in the ME community and not nearly enough recognition of simple coincidence:

It is just coincidence that nearly all official/government 'CFS' research funding and committees seem to support the interests of the permanent health insurance industry.

It is just coincidence that when Mikovits et al published XMRV findings in Autumn 2009 that subsequent negative non-replicating studies were published by others at break-neck speed.

It is just coincidence that two USA government studies on retroviruses in 'CFS' patients in 2010 were pulled at the point of publishing and that the CDC one with the negative result was reinstated days later whilst the positive NIH one nearly didn't get published at all.

It is just coincidence that the British Government banned ME patients from blood-donation for life at a time of international concern over gamma retroviral infection of humans generally and 'CFS' patients in particular.

It is just coincidence that four Retrovirology papers and one commentary were published on the same day in December 2010 highlighting somewhat shall we say incomplete coverage of "contamination" issues alleged in 'CFS' retrovirology research.

It is just coincidence that, at the same time, the UK Myalgic EcephalOPATHY Association published articles highlighting such "contamination" matters but without balancing comment from researchers like Dr Mikovits and Dr De Meirleir.

It is just coincidence that the day after the Retrovirology "contamination" publications most comment in the mainstream media went even further than the authors in claiming the "new evidence" indicated retroviruses were not a problem for 'CFS' patients.

It is just coincidence that the UK charity 'Action for ME' removed patient input from its governance, appointed a former Royal Navy Vice Admiral as its head, receives government money and does so much to support psycho-social matters pertaining to 'CFS/ME' (see: ).

It is just coincidence that so many of those professionals promoting psychosocial theories in 'CFS/ME' have links to the medical insurance industry (see: ).

It is just coincidence that Professor Simon Wessely, architect of so much 'CFS/ME' psychosocial theory, was a founding director of PRISMA, a company providing CBT-GET services to private and public agencies (see: ).

It is just a coincidence that Both Professor Wessely and Dr Charles Shepherd of the Myalgic EncephalOPATHY Association have such a long association with the big-pharma supported pressure-group known as 'Healthwatch' (see: ).

It is just coincidence that, in his self-confessed desire to shift ME from being recognised as a physical illness to a mental one, Professor Wessely called for step by step constructive relabelling to such ends (see: Managing patients with inexplicable health problems. Baruch Fischhoff & Simon Wessely, BMJ 2003; 326 : 595 doi: 10.1136/bmj.326.7389.595. Published 15 March 2003: ).

It is just coincidence that, subsequent to Wessely's call for relabelling, Dr Shepherd promoted substitution of the WHO-recognised Myalgic Encephalomyelitis term with the completely uncategorised Myalgic EncephalOPATHY one - and most medical dictionaries say the hallmark of the latter is "disturbance of mental function".

It is just coincidence that the current round of WHO International Classification of Diseases (ICD-11) has been missing its own published deadlines, is not acting as transparently as it should and that patients cannot find out the exact role and number of 'Wessely-School' supporters having input on the question of WHO revision/ reclassification of ME/PVFS.

It is just coincidence that so many biomedical ME researchers / clinicians have such difficult and fraught career paths.

I could go on and on persuading you of more mere coincidences that are not worth joining together into some naive conspiracy theorist's nightmare conclusion. Instead however, I digress: herewith, a plea for personal advice concerning my own timing, sleep issues and indeed, nightmares... As is the case for most ME patients, the timing and quality of my sleep are often problematic. Recently though, matters have been compounded with the same recurring and vivid nightmare - I dream I am being mugged in a large oak-panelled committee room by a group of prostitutes smoking Cuban cigars, then a fellow mugee in the dream keeps endlessly repeating Pastor Martin Niemller's famous words on the Hitlerian regime:

"They came first for the Communists,
and I didn't speak up because I wasn't a Communist.

Then they came for the trade unionists,
and I didn't speak up because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak up because I wasn't a Jew.

Then they came for me
and by that time no one was left to speak up."

Er, do you think I could use more melatonin at bed time? Advice gratefully received.

I thank you for your time and wish a successful New Year to all those genuinely working for science-based justice for ME patients. Here's looking forward to genuine "best clinical practice for the NHS..."

Genuinely yours,

Kevin Short.
24 December 2010.
[Permission to repost anywhere in the world except on the UK LocalME weblist]

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