ME Activism in a post-NICE World
Greg Crowhurst Sept 1st 2007

(May be reposted)

"Working on it day after day, all the time, that's hard, and that's important, and that's what changes the world .
Noam Chomsky" (2002) (globetrotter.berkeley.edu/people2/Chomsky/chomsky-con0.html)

NICE was published over the heads of a weak and ineffective patient's movement. Skewed, misinformed, wrong and dangerous ; it is extremely difficult to read the Guideline without an overwhelming sense of anger and despair ; it has no relevance whatsoever to people with ME.

Before NICE the (UK) ME community could have made a real difference, if it had not been so split by pointless point-scoring on the Internet.; by vicious attacks on those who have the guts to try and make something happen.; by obsessing over details that don't matter.

One click of a mouse and an activist silenced , a spirit crushed, a campaigner in shock.

Divided, deeply polarised along ideological lines, infiltrated and taken over by blatant vested interests, the ME community has been in no fit state to mount any effective campaign. Post NICE , ME activism must become much more united, focused, serious, disciplined.

The issues facing ME sufferers are profound and complex. Perhaps the words of Afghanistan MP Daoud Sultanzori (2007) also apply to the invasion and take-over of the ME world by the psychiatric lobby : " ..they conduct themselves one inch lower than the clouds. They are not in touch with the real problems..they become their own problem ." (Daoud Sultanzori's (2007) , MP for Ghazni Province , Afganistan , The Guardian, Aug 29 2007 p.21).

Peddling misinformation, untruths, manipulating , distorting and ignoring evidence, knocking back research for decades in their wake, forcing people into endless years of suffering , the medical insurance industry's foray into ME amounts to the biggest medical scandal of all time. Yet they go from strength to strength; the only difference being they are now taking over the entire NHS (Crowhurst G 2007 , Be a Troublemaker .www.metrainingco.org.uk)

Even though the NICE guidelines , as Margaret Williams (2007) notes do " not accept any of the favoured theories of the Wessely School." including those that state ME is a functional / somatic disorder , depression, anxiety or a thinking disorder, and follow the "report of the Gibson Inquiry" ; ( Comments on the NICE Guideline on "CFS/ME" Aug 2007 http://meagenda.wordpress.com/2007/08/30/comments-on-the-nice-guideline-on-cfsme-margaret-williams)

NICE has still chosen : " to largely ignore the wealth of international biomedical expertise and the need for proper physical patient investigation and has effectively recommended abuse and neglect of patients in place of genuine science-based medicine."
(Kevin Short (2007) Myalgic Encephalomyelitis (ME), the NICE and New Labour:
ABUSE OF SCIENCE, ABUSE OF THE SICK AND DISABLED. http://www.pressbox.co.uk/detailed/Health/)ABUSE_OF_SCIENCE_ABUSE_OF_THE_SICK_AND_DISABLED._Myalgic_Encephalomyelitis_ME_the_NICE_and_New_L_141504.html

The seriousness of this flaw, as Kevin Short (2007) states , cannot be overemphasized : "In taking such a path, the NICE process has participated in a monumental affront to international research science, clinical findings and patient experience: the supposed three foundations of modern 'evidence-based' medicine. It represents a thinly disguised case of 'policy-based evidence' usurping 'evidence-based policy'. The NICE/York literature review amounts to nothing short of professional misconduct and fraud: fraud that is based upon unscientific and deliberately fudged patient selection criteria and replete with vested interest.

Could anything be more complex, more profound , more important or more uneven, than the struggle we face as ME activists in the UK ? ME is an easy target and just about everything, including the media, is stacked against us.

The temptation is almost always to deny or resist any struggle , but this is not an option . Things are only going to get much, much worse; as Short points out : "reassurances that lack of 'optional' patient submission to CBT/GET and de-facto labelling of the illness as psychiatric will not affect access to welfare benefits need to be taken with a very large pinch of salt. The inexorable and incremental conveyor belt of Unum- Provident's / New Labour's 'Pathways to Work' gathers pace. Developments at the NICE need to be seen alongside the recent, and equally disgraceful, NHS-Plus Occupational Health and DWP guidelines on 'CFS/ME'. The totality of these measures will ultimately lead to patients being effectively mugged for their state and insurance benefits - as well as being denied proper medical assessment and treatment. "

"There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things" Machiavelli wrote in 1532, It is truly amazing just what can be achieved by those activist groups who believe in themselves; who can overcome self-doubt and who can maintain a consistent focus. In the meeting rooms of Primary Care Trusts (PCT's) and Strategic Health Authority's (SHA's) up and down the land, ME activism is taking place; but it is far too fragile and patchy, still ; not helped by the extraordinary infighting and negativity that tears so many groups apart. Patient empowerment and awareness-raising are key.

It has its moments, it is not easy ­ easy ?- it takes courage that one never knew one had, guts to get in there and fight, an iron will, for activists to keep at it day after day, not always being too sure what one is doing. As Sam Keen says : "they do not know the limits of the possible, so they screw up their courage, shoulder their doubts , and start down the path." Sam Keen (1992) Fire in the Belly Piatkus, , London p.122)

Truth is on our side; we have overwhelming evidence to back-up our simple quest ; to get ME treated as the physical disease it is, not as the mythical psychiatric behavioural disorder that the insurance industry would dearly like it to be.

It is chilling to think how much worse the NICE Guideline could have been if there had been no Gibson Inquiry ( sadly so wasted by the ME Community) . It is not nearly enough, but we are making progress.

Sometimes it helps to put the struggle we face into perspective, as Noam Chomsky points out : "Go back to '62, there was no feminist movement, there was a very limited human rights movement, extremely limited. There was no environmental movement, meaning rights of our grandchildren. There were no Third World solidarity movements. There was no anti-apartheid movement. There was no anti-sweat shop movement. I mean, all of the things that we take for granted just weren't there. How did they get there? Was it a gift from an angel? No, they got there by struggle, common struggle by people who dedicated themselves with others, because you can't do it alone.... " (globetrotter.berkeley.edu/people2/Chomsky/chomsky-con0.html)

"ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.", writes Linda Crowhurst (2007) a severe ME sufferer (www.metrainingco.org.uk). This is the injustice we fight !