DANCING WITH THE SANDMAN: Hot off the Press from NIH News: Scientists to discuss research on XMRV in blood, chronic fatigue syndrome

DANCING WITH THE SANDMAN: Hot off the Press from NIH News: Scientists to discuss research on XMRV in blood, chronic fatigue syndrome

Where's the Benefit?: Guest Post: Benefits Who?

Where's the Benefit?: Guest Post: Benefits Who?

Cogently-written article on the spectre of forced medical treatment.

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

DANCING WITH THE SANDMAN: UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

In a letter to Andrea, the Dept of Health have described ME very clearly and plainly as a 'relapsing condition'.  Since mental disorders cannot cause relapsing, remitting conditions, may we hope the treatment of ME will now be 'brought in line with' the treatment of other relapsing conditions such as MS in areas of our health service other than criteria for blood donation?  And in our Benefits system too?

Un(house)bound!

So *excited bounce* I've done it. Bought a power wheelchair. It's due to arrive tomorrow.

Knowing my depressive self as I do, I've been waiting since choosing it on Friday for a wave of 'ain't it awful' to break over me (after all, I'm still - just! - at the age where I'd hoped to be buying pushchairs not wheelchairs) but it hasn't happened. I'm feeling 100% positive about it and can't wait to get 'out on the road'. Well, on some rather quiet pavements to begin with, perhaps.


What brought this on?


First and foremost, reading this article on part-time wheelchair use by Sue Pearkes.  I really do urge you to read it and pass it on as widely as you can. 


Sue writes:


"My attitude towards wheelchairs is that they are no different from glasses. You wear glasses to see better, and to improve your quality of life. You use a wheelchair to get around more easily, and to improve your quality of life."


and


"it has enabled me to get out and about and do things without causing me great physical discomfort and pain, or completely exhausting myself for the next few days."


And when I read those words, it all seemed so obvious. Of course I shouldn't have to choose between absence of pain and absence of action. Of course I shouldn't have to accept being virtually housebound just because I can no longer drive or walk for more than about 10 minutes without suffering payback.  Why should I? What had I been thinking for the last five years?

The article was a real inspiration to me, as I know it has been for other people, and I really hope the author knows what a difference she has made by sharing her experience and determination so openly and eloquently.




At the same time I was galvanised by something that was said during a discussion with the Second Life ME group (Corina has written beautifully about the group here ).  I was surprised by how comforting it was to meet  the Second Life chat group. My non-ME friends are wonderfully supportive, but there's something 'extra' about a response that includes the words 'oh, me too!'.  Anyway, we were exchanging tips on things that helped us cope with bad days and I 'admitted' that sometimes I put one of my arms in a sling to reduce pain at the shoulder. Now I find that always sounds quite odd, so I was quick to add a jokey 'but only when no one is looking!'.  Not only did the group not find it odd, they didn't let me get away with the preventative self put-down either.


"Why only when no one is looking? You have to stop apologising for the things that make you feel better!"


Damn right.  I realised that, in fact, I do feel like apologising a lot of the time - for all the things I can't do, for no longer being the person my friends used to know, for simply having such a ridiculous, misunderstood, fuzzy and plain embarrassing illness.


And I shouldn't.  I should smack myself upside the head when that urge kicks in. And I should for sure refuse to make myself iller just because society on the whole likes its chronically ill to be brave, white-faced, tight-lipped 'little fighters'.  Not that I'm not a fighter...I can be, as Alan Breck would put it 'a bonny fighter'...it's just that I have the right to pick my own fights, and from now on I'm not choosing the ones that are me vs The Invincible Invisible Man.




So with that groundwork laid, I looked for guidance from online ME friends who have already taken the 'wheels' step, and cautiously tried out the idea on some of my non-ME friends. Here's one other thing I should have known better than....I should have known better than to be nervous about that. The ME friends were not only encouraging but offered tons of practical help.  And my non-ME friends said 'what a fabulous idea, when can we go out somewhere with it?'.  Absolutely no one thought this move was a defeat.



My lovely husband made the trip to choose a chair as much fun as a trip to choose my first car, and is as excited as I am. (Though at some point I will have to disillusion him about his belief that he'll be able to get his hands on a remote control device to move me around from a distance!)


I'm aware that there may be hostility to face from elements who believe wheelchairs are only for those whose legs are paralysed and that if you can walk at all, you're a fraud to use a chair. And I hope if I meet that, I'll be able to meet it with a smile and polite explanation (though knowing me, I kind of doubt it). But really, the possibility of abuse or being mocked isn't a good enough reason to shrink my boundaries to ten-minute walks and the house - or to pay for 'a real day out' with a week's pain.  




So why wasn't I ready to do this years ago? After all, I haven't really driven for three years now, and have had ME for almost six.  I think...I wasn't ready to see anything other than 'recovery' as a 'win'.  That changed this year; I stopped expecting recovery while still hoping for good periods of remission.  I'm ready to be the 'me with ME' without telling myself everyday that 'this isn't really me'. It is me. As a wise friend is wont to say 'suck it up, buttercup'.  So not only is the wheelchair arriving this week, but my car is going.  I'm sick of seeing it sit un-driven under a trap and feeling somehow a failure because I'm not driving it. It can go be loved by someone else, and I have shiny stickers ready for my new wheels.


I can't wait!


A huge thank you and bundle of hugs to everyone who helped me make this step!

Belief and bullying

This well-written article by Doctor Neil Abbot of ME Research UK appeared on the HeraldScotland website today.

The writer asserts that diagnosis is usually only the start of an ME patient's problems, and  talks with piercing accuracy about the two 'black holes' facing us - lack of credibility, and lack of joined-up, effective treatment. I have emphasised a couple of points that particularly struck me, below.

"Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor. Patients’ families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.

This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.

The second black hole relates to treatment. Since the underlying causes of the illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms, such as chronic pain or sleep problems.This can cause patients to become disillusioned, and many tell me they have not seen a GP for many years, preferring to struggle on alone rather than face what they see as a lack of understanding."

Let me repeat that first highlight:

 Indeed, studies show that roughly half of GPs don’t believe the condition actually exists.

I've tried and tried , but I still do not get it . Just how do you get to be so fucking arrogant that you declare the reality of an illness, in the face of all evidence, official NHS guidelines and WHO, to be a matter of what you personally believe - and refuse sick people treatment and help on that basis? 

I have had a doctor like this. For no reason she was prepared to give me, she decided to insist I started going in for monthly review appointments in order to be allowed to stay on the anti-depressants I had been successfully on (with yearly review) for several years. Fool that I am, I tried to debate this. All my previous doctors have been emphatic that getting the depressive to manage their condition is very important and a way of helping them feel in control of life, independent. I had not developed adverse reactions to the drug. I had not stopped being depressive.  I asked why and how she felt my condition had changed, to be forced into this backward step. 

Silly me, I tried to explain to her why monthly visits to her would cause problems - first, that my husband has to take a half day off work every time I need to go to the surgery since I can't drive any more; second, that I might not always be physically well enough to go;  third, that because my immune system is fucked, every single trip to the surgery results in me going home with an infection, which causes a flare of ME symptoms and I was reluctant to have this happen every four weeks. 

"That," she returned flatly "is because doctors' surgeries are for people who are actually sick."

And that was that. Because other health professionals had diagnosed me with ME, this doctor felt entitled to treat me as a liar and an idiot.  Quite simply, in her mind, no one with ME could possibly have a valid view on anything.  The intelligence that got me a degree from Cambridge, the years and years learning to manage depression, my previous incarnation as a successful working woman - the ME label wiped them all out for her and transformed me in her mind and eyes into this undeserving, sickening crazy woman - a waster taking up her oh-so-valuable time.  So if I wasn't prepared - without getting an explanation -  to do something that would make me sicker and might not be physically possible, she would take away the drug that helps me not scream at the wall and take overdoses. Because she could, and - I very strongly got the impression - she felt somehow that I 'deserved' to have my life made difficult. Yeah, that'd teach me to dare say I have ME and ask that this fact should be taken into account by my doctor!  Threaten to take away her drugs and see if she's really too sick to come in, eh?

It was the most frightening piece of bullying I have ever experienced (and I include in that a former partner who used to smash bits of furniture when crossed).  I wasn't asking to have more tests done, or be referred to a specialist, or any of that stuff we occasionally dream about. Just for my GP to respect the fact that my physical abilities are curtailed by my sickness.

I left her practice of course - in tears, sick and shaking with rage and helplessness  - and although my current GP is a helpful and respectful (and rather charming) human being, I do not ask him for any help that is ME-related. I can't imagine ever again asking a doctor for help where ME is concerned. The most I hope for now from our medical system is not to be treated with utter contempt and rejection. Which, let's face it, is a pretty low place to set your expectations. What the hell kind of doctor is proud of having achieved such a result?

And of course, I'm not the only one my GP from hell was calling crazy. I didn't diagnose myself. So presumably the GP and hospital specialists who made the diagnosis must be crazy too?  One GPs belief is more important than their experience? Because of course, the GPFH didn't do any tests (or psychiatric evaluation) to disprove the earlier decision of these medical professionals. It was enough for her that I had been given a particular medical label by them - one in which she - apparently like 50% of our doctors - have chosen not to believe.

And that's what I really, really don't get about the 'ME is an aberrant illness belief' camp.  They don't just have their opinion (for which they are never asked to provide, nor do they offer, any proof), but they seem to accuse anyone and everyone who takes a different view - patients, doctors, research scientists - of absolute bad faith.  Their minds are 100% closed to the possibility that what they believe might be wrong. You cannot change their minds with historical example (hello, 'MS as lazy man's disease' not so long ago?) or current research reports. 

I'm pretty sure they do not assert that all illnesses exist or not depending on their personal beliefs. What gives them the right to take that approach to ours? And what the hell makes them want to behave in such an unprofessional and unintelligent manner?

They react to ME patients not only with dismissal but an ill-concealed dislike which is baffling to encounter. 

One wonders sometimes if they are just venting all their frustrations on a group of patients it has somehow become completely acceptable within our health service to bully and dismiss.

As Dr Abbot says in his article:

for many a diagnosis is only the start of their problems. They have been given a label for which there is no known cause, no specific treatment and an uncertain outcome.

Papers and panics

So, as Elle mentioned in her comment yesterday, we may soon get the FDA study after all (details below).

Yesterday I was talking to Anth about how much the psych school attitude to ME reminds me of a witch-hunter's attitude to those accused of witchcraft - namely, if you protest your innocence, to a witch-hunting mind that proves your guilt in their looking-glass-world mind.  With particular reference to events in Salem, I remarked that witch panics have historically rarely (if ever) been ended by appeals to reason or decency. They have ended when they became too embarrassing to higher authorities, and/or when there has been a greater vested interest in them ending than continuing.

Maybe the CDC has overreached itself in recent weeks and crossed that 'become too embarrassing' line?



Quoting from ProHealth:

The world-famous paper by FDA/NIH researchers reporting that they found evidence of XMRV in ME/CFS patients’ blood will be published "within weeks," according to the CFIDS Association of America.

A posting dated Friday July 9 on the CFIDS Association Facebook page notes that a sentence has been added to their article titled  “XMRV Link Accelerates Scientific and Media Interest.” 

Specifically, the revised article now states, at the end of the eighth paragraph: "The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks."

Though no source is cited, the CAA further commented (just before 11 am Pacific time) on Facebook that "The information comes from several well-informed people close to the study with whom we are in regular contact."

Somatic medicine abuses psychiatry - and neglects causal research

Today's post is the low-energy option of a link again. And because it's a weekend, I've given you a link to a long, cool, clinical  read. I found it fascinating, especially the sections on epidemiology and statistics.

Somatic medicine abuses psychiatry

— and neglects causal research

is an article I found, via Dancing With The Sandman. It is copyrighted by the author, Per Dalén. 

And they call US crazy....

Article in The Independent. On XMRV and the paper that was pulled. Finally the truth is getting some publicity in the UK,you think? Sorry to disappoint you...

This is pure Science Media Centre stuff. Sly dig at ME patients who believe in 'conspiracies'. The ridiculous, discredited and downright fucking dangerous assertion that CBT is

 a psychological approach to treat people with the severest symptoms.




and that


 Physical treatment can include graded excercise therapy, where patients are encourage to gradually do more to combat their feelings of exhaustion.

I repeat here my earlier report on the result given in the Managing My ME study from the ME Association:


Graded Exercise Therapy (GET) tops the list of 'treatments that made me worse' by quite a long way with 56.5% saying GET had made them worse - this breaks down as 33.1% 'much worse', 23.4% 'slightly worse'. A mere 3.4% said they were 'greatly improved' after GET; 18.7% said they were 'improved' and 21.4% reported 'no change'.

But let's not let the facts 'get' in the way of a good SMC brief, eh?



And contains the near-slander from anonymous 'scientists' that the FDA paper was held because it is 'seriously flawed'. Unlike the CDC paper? This is the CDC whose honourable background in their dealing with ME/CFS includes simply embezzling funds given them for CFS and using it for other things 'because they felt it wasn't important'. The CDC whose study had a patient cohort designed to exclude anyone who had the defining symptom of onset after infection, and included so many who have never been diagnosed with ME but said they are often tired?


Not to mention, we are talking here about Dr Alter, the man who discovered Hep C. In what way do these anonymous accusers claim he has suddenly become incapable of decent and thorough science? Well, they don't specify. It's enough to just keep throwing mud until some of it sticks in the public mind.  I hope the 'Independent' feels proud of helping them advance their agenda.

Oh lord, what to write?  I'm too angry to think coherently, so writing at all is probably a bad idea. Where to begin?

Should I start by ranting about, to steal Al Franken's phrase, lies*, and the lying** liars that tell them?

*when I say 'lies' here, I'm looking in particular at the section of the article entitled 'Facts'

**for those who don't know, the Science Media Centre, set up by the last government to put out briefings of scientific and medical matters, has as its 'ME/CFS expert' one Simon Wesseley. He is a 100% pusher of the lie - oh sorry, the liNe - that ME is purely in people's minds, and can be 'cured' by CBT and GET. You should use your own judgment as to how balanced his briefings on the retroviral research and results will be...


Or about the ghastliness of using this picture to illustrate an article on ME and XMRV?

 Is this the approach now? If you can't brush something under the carpet, at least make sure you airbrush the fuck out of it?  Make it look like something from a Bridget Jones film?

All this model needs to complete the insult is a thought bubble that goes something like 'oooh, drank too much again. Great party though. OMG, did I really have sex with Daniel? I should really get up soon and go skiing...'

Or maybe for comparison purposes I could post

this picture of Lynn Gilderdale, whose mother helped her to die when the agony of severe ME became too much to bear.  Or a pic of Sophia Mirza, who had CFS listed as her official cause of death.

This, Mr Connor, is what severe ME actually looks like.  Still think CBT is going to help?  Still think going to a psychiatrist for 'expert opinion' on a retroviral issue was a bright move?

Looking at that picture of Lynn I am gobsmacked by the sheer obscenity of an article using the first pic anywhere near an article on ME.


Perhaps finally I could quote from some of the cogent and articulate responses to the article, and remind you that to the psych school every single one of these intelligent, fact-quoting people are proving they are hysterics simply by posting views that contradict the 'it's all in our heads' school.

If you deny you're a witch, you must be a witch, QED.

 As I read in an excellent article only yesterday 

... as medical testing became more sophisticated there was a shift in this philosophy[that seeing and listening to patients was valuable to doctors].  If the patient complained of an ailment and the medical test didn’t pick something up, the focus turned to the psychological state of the patient.  Maybe the patient was crazy.

The Wesseley school have gone a step further - any patient that even wants the medical tests done is clearly crazy. Tests shouldn't be done because they might encourage these people to go on mistakenly believing they are sick. (Seriously, this is advice they give out to GPs.) Or, heaven forbid, they might prove these people are really, physically sick, and then where would the psych school's nice little ME cash cow go? Can't be having that, huh?

Here are highlights from the responses to Steve Connor's article in the Independent. You decide who is deluded.


Regarding the cohort of patients used in the CDC study into XMRV in ME/CFS please consider the following direct quote from their recently published paper :

Direct quote from CDC paper:


"Our study is the first to evaluate XMRV infection in persons with CFS and healthy controls from the general populations of Wichita and Georgia. These CFS cases are different from CFS patients seen in general practice and referral clinics; of the participants from the population based study in Georgia, only half had consulted a physician because of their fatigue, about 16% had been diagnosed with CFS, and 75% described an insidious onset to their illness that had no obvious relation to an acute infectious disease."

Only 16% had been diagnosed with CFS .Only half of those used in this study had fatigue of a nature that prompted them to consult their doctor. 75% did not fullfil the basic criteron for diagnosis that is becoming ill after an infection. 

The results of this study were going to be skewed from day one because the vast majority of the patient sample used did not suffer from the illness that was being studied. 

Would this be acceptable in a medical study investigating cancer or diabetes ?

***

XMRV is a RETROVIRUS, not a virus.
A Retrovirus is never benign in humans and can lead to lymphoma-type cancers.
The other 2 retroviruses are HIV and HTLV-1....The CDC (USA) and Kings College (UK) teams are paddling around in sunny, shallow waters like small boys fishing with nets for minnows. 
ME is a shark of an illness. 
It lives out in very cold, deep and dangerous waters, which is where the patients are desparately fighting for help and which is where we have to go in order to help them.

***

Despite the ME community having a strong belief in the link to this virus, I know its true to say that all we want is for investigations to be carried out to the very end. If it doesn't pan out, ok, then lets move on with the research.

What has angered all of us so much is that there does seem to be a strong agenda for certain groups to disprove it, and as for the CDC, I feel fearful to have a group who embezzled funds earmarked for ME research having the power to silence the WPI, and Dr Alter.

***

"However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV."

Since these scientists aren't named, readers can't examine whether they might be among the several who have trivialized ME/CFS and may feel ashamed if XMRV turns out to be the cause. PNAS is universally understood to be the world's #3 or #4 journal for biomedical research, and it is undisputed that PNAS and its chosen reviewers had already judged Dr. Alter's paper to be reliable, prior to the intervention/censorship by political appointees.

Alter's career is not exactly a joke: he figured prominently in the discovery first of the hepatitis B virus, and later of the hepatitis C virus. To strike two such blows in one lifetime is extremely rare and could well have merited mention in this article. Some 300,000 Americans were infected with hep C by blood transfusion, prior to the risk per transfusion plummeting from 30% to 0.01% thanks largely to Alter's exertions. Dr. Lo is also a discoverer of novel microbes.

The Lo/Alter results concord with those of WPI, the US National Cancer Institute, and the Cleveland Clinic. Other results certainly discord, for reasons yet to be determined. This dispute must be decided in the open by the virological community. For appointee bureaucrats to go around censoring science is a breach of the public trust and a positive outrage.

Eric Johnson, USA

***

First, XMRV is not a virus but a retrovirus. What's the difference? A virus causes the flu. The best known retrovirus, HIV, causes AIDS. A retrovirus changes the DNA or RNA in your cell and you have it for life.

Second, the CDC did not find XMRV because they created a study intended to NOT find it. Please see comments by Suzanne Vernon of the CFIDS Association of America: 
http://www.cfids.org/xmrv/070110study.asp

Third and supported by the link above, it is the CDC study, not the NIH/FDA study that is seriously flawed. The NIH study was peer reviewed and approved for publication in PNAS when a decision was made to hold publication of both studies. 

And Fourth, in response to your statement: "Treatment can include cognitive behavioural therapy, a psychological approach to treat people with the severest symptoms. Physical treatment can include graded excercise therapy, where patients are encourage to gradually do more to combat their feelings of exhaustion."

If someone has true ME/CFS, Cognitive Behavioral Therapy and Graded Exercise Therapy won't make them better, and they may very easily be harmed by GET. Exercise exacerbates symptoms of ME/CFS and can leave a person bed bound and in intolerable pain for months or even years. 

It is a disgrace to your country and your medical system that these "treatments" are recommended for patients with ME/CFS, when they are ineffective and even harmful. This kind of "treatment" is inhumane

Shaw, Sharpe and Sensibility

Still running low to empty on the spoon front, right when I want to write about, XMRV, Second Life, illness and martial language and...well, stuff.

So all I want to say at this moment is - go and read

THIS

Brilliantly written, and as true today as back in 2005 when it was written, unfotunately.

Eyore-ish on XMRV

My feelings on the news that a second serious study has backed up the WPI results for XMRV remain mixed. In this I seem to find myself in the minority amongst a huge outbreak of joy. After all, the news is good, right?

So why I am feeling so uneasy about it?

Well, for one, this wasn't an official announcement. It wasn't publication of the study. It was a leak, saying that such results would be officially announced 'really soon'.  Where a leak gets splashed like this (as it were), someone's running an agenda. Whether you consider the agenda benevolent or malevolent, isn't really the point. Why was this 'announcement' made? To put pressure on the people who did the study? If so, is it an attempt at sabotage, or an attempt to force them into publishing fast? Maybe someone worried they would cave to pressure to play down their study, or keep it quiet, and wanted to force their hand.

Whichever it is, one thing seems clear - the people leaking this stuff aren't necessarily putting the wishes of the people who did the study first - and one has to wonder how happy that will make them about doing such studies in the future, and how impressed it will make them with ME campaigners. These, I think, are people we want to keep 'on our side'. Trying to bounce them into publishing on someone else's schedule seems not only rude but potentially self-defeating.  I'm already seeing comments blaming them for the awful pressure people with ME are under waiting for the official announcement. Which is unfair and stupid - that pressure hasn't been created by them, but by the people who 'leaked' and created all the huge expectation of (and pressure for) an imminent announcement.

Not to mention, now this leaked info is out there, 'the enemy' has been given time to prepare the inevitable attacks and rubbishing of the study before it's even been published. Not too bright, you might think - though having been unable to resist passing it on via this blog, I can't really throw stones.

And then I worry about the sheer amount of hope and delight that has been generated by something as yet unconfirmed. Understandably, people are over the moon about this. Our hopes, after all, have taken such a beating since last November, with quickie studies rushed out to rubbish the WPI results and tell us to stop hoping. Our 'leakers' must have known perfectly well the emotions and expectations they would stir up.  If the looked-for confirmation does not come (and people have been looking for it every minute since the announcement was made five days ago), hope will be shattered for so many, with all the detriment to their fragile health that entails.  And the responsibility for that will fall squarely on the shoulders of those who chose to make a big splash with this leak.

If good news - the best, in fact - is coming, then of course I'm happy. I'm already wondering about blood tests, how we might manage them on our budget, how one even goes about sending blood to America. I can't help it, and neither can anyone else longing for cause and possible cure to be established. But on the whole, I'd have preferred to hear about this after the study results were officially published - and not see everyone stirred up so hugely over something we don't have yet and may not get.


I'm aware of how grouchy and negative that all looks. But back in November when the WPI results were announced, I read something that reduced me to tears: one poster, in the rush of joyous comment posted saying she was getting tested for XMRV just as soon as she could. And, she said, if she tested negative, she would kill herself, because this was her last chance for a cure.

That's the strength of feeling that is being played with here - and I just can't feel comfortable with it.

And who, exactly, decided this?

Reposted from Stonebird . No, I'm not happy that an association firmly in the GET camp despite all evidence for the damage it does, is now calling itself'the sole training provider for all NHS staff in "CFS/ME". How long is OUR money going to go on being used to spread ignorance and downright untruth to  medical staff?


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 ?