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BACME ?? who...????

Stonebird : the lived exerience of Severe ME

BACME ?? Who ??
Greg Crowhurst

(permission to repost)



BACME : the " British Association for CFS/ME" ...who ??

On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME"

"http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf

My wife's reaction was immediate and fierce .

So this morning I try and find out about BACME.

Not easy for there's no apparent website.

In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now Medical Adviser to AYME (Association of Young People with ME), which has adopted the psycho-social model and actively promotes CBT/GET. "
(Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)

Her Deputy , as far as I am aware, is Alison Weardon of the FINE trial.

Here's the thing : I am a Registered Nurse with several peer reviewed Nursing articles to my credit, I am also a fully qualified Trainer - having run my own training company throughout the NHS for over 8 years. My knowledge of Severe ME, is gained through 17 years of caring experience, publications and advocacy, however BACME would not accept me as a trainer, ,even if I could work, which I can't, for it seems that they will only accept as "patient representatives" those who subscribe to NICE Clinical Guideline "53" : something I could never do .

NICE Clinical Guideline "53" : that's the the one which relied upon an evidence-base of just one systematic review that comprised only 18 clinical trials, not all of which were random controlled trials (RCTs), of which just five were RCTs of CBT and a further five were RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all on a patient base of just 1,448 patients who may or may not have had ME/CFS; that's the one which rejects the WHO formal classification of ME/CFS as a neurological disorder; that's the one which ignores the international evidence that ME/CFS is a biomedical, not psychiatric, disorder; tha's the one which proscribes appropriate testing for ME patients ; that's the one which is condemned by virtually all patient groups as "unfit for purpose.

(cf Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)


As a struggling husband I am concerned that , according to the West Midlands ME Groups Consortium , "the severely affected with ME appear to have no representation whatsoever" on BACME. Thank God is our reaction; as long as they are not doing any training for severe ME !

For you would not want the severely affected to be involved in any way in advocating CBT and GET -mot that you'd find anyone with genuine ME who would, beause they are dangerous and do harm !

The FINE trials themselves show no advantage or efficacy whatsoever to the use of CBT and GET for the severely ill. So how can BACME justify training people in it ?

"How dare they ? How dare BACME presume to speak up for people with ME " ? my wife asked last night, furious at the apparently unstoppable , ongoing indoctrination of clinicans in methods that case harm to genuine ME patients .

After all these years of struggling to care for my wife who has very severe ME , I am so very tired of the endless fudging or pretending to meet the needs of people with ME, by organisations like BACME, who actually work to a psychiatric paradigm , based upon pseudo-science and flawed patient selection criteria.

Who has given BACME the authority and the right to claim to be the sole ME training provider for the NHS ? What's happened suddenly to the free market and competition? What's happened to the biomedical truth of ME ?

If you only have one provider, saying they are the sole provider and they are excluding the biomedical model, this is dangerous for people with ME, who have realy physical dysfunction and who will be made ill by the promotion of these regimes as treatment, when they simply aren't.

We are shocked and horrifed . Surely this needs challenging ?

Today I feel my Powerlessness


 Today I feel My Powerlessness

I shake with powerlessness and rage . All of a sudden , here in the UK it’s those on Disabled Living Allowance who are responsible for there nor being enough police men on the beat; the Prime Minister announced in Parliament yesterday.

As Chris Ford argues so powerfully  , scapegoating of the  most vulnerable is entrenched in the New Right agenda :

the New Right and some of their supporters continue to cling onto some notions of eugenics in order to scapegoat unpopular minority groups who are viewed on the right as the new 'undeserving' poor. These include indigenous groups ( for example, Maori and Aboriginal peoples), ethnic minorities (who mostly hail from immigrant backgrounds) and single parents, amongst others. With the emergence of the New Right and their neoclassical agenda of shrinking the size of the state, there has been a need to scapegoat these and other groups. This has been done in order to popularly advance free market economic and social agendas which have seen the rise of social inequality. “ 

Chris Ford
http://www.voxy.co.nz/politics/eugenics-and-new-right-david-garrett-exposes-real-desires/1273/40744

I shake with rage because because the persecution, the harassment, the blaming of the sick is no different from what happened all those years  under New Labour , shame on them,  from what is happening all the time to advance the Corporate Medical insurance Industry agenda , from what is  happening  under the ongoing  influence of the Psychiatric Lobby : people with ME  now labelled as the “undeserving sick”.


I note with despair the growing mercy-killing agenda.


And I think to myself, I write in my journal this morning , I’ve got to get my wife out of this system, for it is killing her.


But  there’s only me and my dog ;  no money, no status, no say, no time, too much pain.


Today I feel my powerlessness.

Today I feel my Powerlessness


 Today I feel My Powerlessness

I shake with powerlessness and rage . All of a sudden , here in the UK it’s those on Disabled Living Allowance who are responsible for there nor being enough police men on the beat; the Prime Minister announced in Parliament yesterday.

As Chris Ford argues so powerfully  , scapegoating of the  most vulnerable is entrenched in the New Right agenda :

the New Right and some of their supporters continue to cling onto some notions of eugenics in order to scapegoat unpopular minority groups who are viewed on the right as the new 'undeserving' poor. These include indigenous groups ( for example, Maori and Aboriginal peoples), ethnic minorities (who mostly hail from immigrant backgrounds) and single parents, amongst others. With the emergence of the New Right and their neoclassical agenda of shrinking the size of the state, there has been a need to scapegoat these and other groups. This has been done in order to popularly advance free market economic and social agendas which have seen the rise of social inequality. “ 

Chris Ford
http://www.voxy.co.nz/politics/eugenics-and-new-right-david-garrett-exposes-real-desires/1273/40744

I shake with rage because because the persecution, the harassment, the blaming of the sick is no different from what happened all those years  under New Labour , shame on them,  from what is happening all the time to advance the Corporate Medical insurance Industry agenda , from what is  happening  under the ongoing  influence of the Psychiatric Lobby : people with ME  now labelled as the “useless sick”.


I note with despair the growing mercy-killing agenda.


And I think to myself, I write in my journal this morning , I’ve got to get my wife out of this system, for it is killing her.


But  there’s only me and my dog ;  no money, no status, no say, no time, too much pain.


Today I feel my powerlessness.

The Budget : where's the ME Charities ??

Stonebird : the lived Experience of Severe ME


A  response to  The UK Budget :
 where's the ME Charities ??
Greg & Linda Crowhurst 22 June 2010

(permission to repost)


Where 's  ME ??? Learning Difficulties , Autism, Mental Health, seemingly every  big charity have issued a Budget response already , strongly condemning the plans for Welfare Cuts and DLA .

 But where's the outraged voice of  ME ??

Come 2013 and if you are a Severe ME sufferer claiming DLA, you will have to undergo a (disdainful ) encounter with a medic who has not the faintest notion of the complex neurological disease that is Severe ME ;  it's going to be called  a  readiness to work assessment.

How can continuing to deny the reality of the physical illness that is ME  and  how can the ongoing   refusal  to biomedically treat ME,   be expected to get anyone back to work ? Continually hounding people with ME  to jump through hoops to prove they are ill, is not going to ready them for work.

If  Osborne 's  preposterous Welfare plans are not challenged, starting today,  the  cost  to the severely affected is going to be unspeakable,

When they cannot see people normally, when they cannot live in the real world  because the environment is so hostile to their bodies, when they cannot process information and when any stress is likely to  lead to worsening symptoms, never mind the post-exertional impact ; how can those who have the nightmare that is severe ME , be expected to undergo all that a back -to -work assessment would entail ??

Surely  people with Severe ME  should be exempt from any  readiness to work assessment and surely the ME Charities should be shouting that out tonight ?

The silence,  though  is deafening. Where are the ME Charities anyway ??

Who is really  speaking up for people with Severe ME ? Who is really making an impact ? Who is being listened to ?

How can we possibly  be heard if the people who say they represent ME are not yelling out  that George Osborne's Budget  is not only  unjust; it is dangerous for people with Severe ME ?

And where is the Coalition's promise to protect the poor in this persecution  of the very sick and disabled ?

Where's the fire anymore ???

The late 1980’s and early 1990’s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers.
Cort Johnson , Phoenix Rising

http://aboutmecfs.org/Int/IntHennesseyCFS.aspx

"In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition.  "

Maryann Spurgin, Ph.D., Reviews the 2003 ME/CFS Clinical Case Definition
http://www.cfids-cab.org/MESA/cccd-1.html
 
 You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart have been trying to warn you for 20 years! 

Tom Hennesy, the founder of ME Awareness day
http://aboutmecfs.org/Int/IntHennesseyCFS.aspx

..and here I type ;  another weekend of torture and torment, of gaps in between the overwhelming disease,  of talking  about the next moment and hoping  that the pain is not going to be too bad.  Holding her.....

I  have been asking myself, where is the fire these days ?

The ME community seems to have  metamorphosed into a self-destructive, angry  clique, characterized only by its propensity for self-sabotage  and  the way it tries to destroy any  activist  who dares puts their head above the line, for the sake of a few  egos.   My guess is that very few in the "ME "community, actually have genuine ME.

The ME "Groups" here in the UK, if they are not acting as a glossy front for the psychiatric lobby , if they are not promoting "opathy"  , are just  too worn out and tired these days to make any difference.  I visit those websites that are supposed to be speaking up for the severely affected with mounting  sadness and a sense of growing isolation.

Invest in ME, in my opinion,  are the mighty  exception,  bravely waving a bold , fluttering banner, doing incredible things, taking inconceivable chances .

The  flame, thank God,  still burns.

In the hearts of all those who really know what it's like.

Worn ..

Went to a senior - level meeting yesterday, at the local PCT.  After 17 years of living on carer benefit, my clothes feel a bit worn, my hair not neatly trimmed ,  my sandals out of place.

Being swished to the top floor, past  PA's, PC's , curved desks, busy open plan partitions,  was to glide through  the world I used to know; now it's all the kitchen, the bedroom , toilet and garden, where we sit in isolation,  for years on end.

My voice is an effort.  If asked I would have said I feel tired and angry.  I make my tiny contribution, speaking up, I hope , for the severely affected. Making every word count.

Yes; there's an impact.

It's no game. There's no ego. This is me ,  fighting for my love and our life.

Out of place here in this expensive 21st century HQ. A bit of a shabby carer .

How Fine do you have to get ? My recent BMJ Responses

  From BMJ : http://www.bmj.com/cgi/eletters/340/apr22_3/c1777


Stouten's comments are concerning because he is quoting fatigue as a cardinal symptom of CFS, which is fine if you separate CFS from ME and admit that you are really just looking at people who just have fatigue conditions rather than a neurological disease.


However people with ME do not even have to have a diagnosis of Fatigue, to have ME ; it is a glaring mistake to not use the Canadian criteria to define the group of people used in the research , which would much more clearly identify ME patients.


Looking at the percentages, quoted in Stouten, he points out that 86% of people still had significant fatigue at 70 weeks and 26% were made worse, which seems to suggest that these people probably had ME and the other 14% did not.


ME is an exhausting illness , however the fatigue the study should have been looking at is post exertional fatigue, which has nothing to do with "illness beliefs", or the fatigue the study was looking at, but with well documented (5000 + published papers)multi-system physical dysfunction.


It is a travesty to claim that this poorly identified group of participants represents ME only and more worryingly that Wearden et al are now scrabbling about with a fine tooth comb just to find any measurable change in fatigue at all.


Interestingly Wearden et al haven't even identified what percentage they have now arrived at.
The Chalder scale will, by definition, represent non-ME Fatigue, rather than the post exertional fatigue which is the hallmark of ME , because it is based upon illness beliefs and not physical illness. This is presumably why it only comes up with at best a "clinically modest " result.


When is it time to admit that this is not the way to go to help people with ME ?


More than enough time and money have spent on looking at wrong illness beliefs; a ridiculous issue to be focusing on, for such a severely physically and disabled group of people, who need biomedical input.


When will it be acknowledged that the biopsychosocial pathway has never been appropriate for ME, because it denies the physical truth ?
.........................

To which Goudsmit replied  and here is my response to her :



  Goudsmit's statement :".. the FINE Trial was designed just after the publication of the Canadian criteria and it's therefore rather unfair to criticise Wearden et al for not using what were at the time little known clinical criteria which had not yet been evaluated for use in research" cannot be allowed to go unchallenged.


The Oxford criteria upon which the FINE trial was based , were drawn up by psychiatrists in 1990 and broaden the 1988 Holmes et al CFS criteria to include all those with psychiatric “chronic fatigue" , while specifically excluding those with neurological disorders.  ( Sharpe et al 1991)


Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, exclude all those with authentic Ramsay-defined ME from study .
By the time the MRC announced that the Oxford criteria were to be used as the criteria for the PACE/FINE trial, in May 2003, they had been well and truly superseded :


Research, for example, published in 2002 found that in terms of 'who has ICD ME/CFS' ? :


CDC1998 criteria 80% plus may have ME/ICD-CFS
 CDC1994 criteria 40% may have ME/ICD-CFS
'Oxford' criteria 10% may have ME/ICD-CFS
(Neilson 2002)


Additionally , it is particularly significant how US researchers noted in 1999 that :  “ "neither the 1988 nor the 1994 case definition identifies the sickest patients because information about symptom severity is not required to make a diagnosis of CFS” ( Hill et al 1999)


The FINE trail was supposed to be about those most severely affected.


In 2004 Lord Warner, confirmed that the UK accepted that ME/CFS is a neurological disease , listed as such by the World Health Organisation (WHO) under ICD-10 G93.3, yet the PACE/FINE trials still set out to study only psychosocial management regimes and treatments using as a set of criteria "ICD10: 48.0" : "Mental and Behavioural Disorders"; subtitled "Other Neurotic Disorders" (Neilson 2002)


Patients wrote to the MRC in 2004 pointing out how the Canadian Clinical Case Definition , "was produced by an Expert Medical Consensus Panel of eleven physicians who between them treated/diagnosed over 20,000 ME/CFS sufferers worldwide, enabling medical practitioners to more easily distinguish ME/CFS, with its pathological fatigue, from ordinary fatigue and other fatiguing illnesses." (Kennedy 2004)


Given that they specifically exclude people with ME from study, there was no compelling reason, whatsoever, to have based the FINE trial upon the Oxford criteria; apart from a serious case of discrimination.(cf Neilson 2002)


As Hooper (2010) points out the MRC's PACE/FINE trials:


".. seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be  recruited and is the only clinical trial that the Departmen t for Work and Pensions (DWP) has ever funded."


   Goudsmit states : “ the emphasis on fatigue in research into CFS and CFS/ME is unfortunate. “ The FINE trial results ,at least, have proved how true that is.


References ;
Hill et al 1999 Natural History of Severe Chronic Fatigue Syndrome.    Arch Phys Med Rehab 1999:80:1090-1094).
Hooper (2010) Magical Medicine : How to Make a Disease Disappear http://www.investinme.org/Article400%20Magical%20Medicine.ht m 
Kennedy A (2004) ME/CFS, complaint letter template http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm? id=370090
Neilson L(2002) New Canadian clinical definition - ME/CFS http://www.cfids-cab.org/cfs- inform/CFS.case.def/me.cfs.canadian.def03.txt
Sharpe et al (1991) A report – chronic fatigue syndrome: guidelines for research. JRSM 1991:84:118-121).