Take part in our Severe M.E. Symposium from home

[Valentijn]

As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed to find why it may benefit some people and not others.

Here's a hint: they don't have ME. Perhaps you need to change your name to "Action for Chronic Fatigue", if you want to appeal to a broader base, and include those who feel a little better after taking a walk. But by advocating those therapies, you are contributing to ME patients being harmed. You are doing a horrible disservice to the very patients you purport to represent.

Clare McDermott and George Lewith will attend the Symposium to present their recent findings on the lack of NHS service provision for those most severely affected by M.E.

They (and you) are asking entirely the wrong question, and indicating your complete lack of comprehension of the real problem in the process. No one with ME actually cares that severe ME patients don't have access to GET and CBT - if anything there's a sense of relief that at least some patients aren't being hunted down so they can get abused in their own homes. Before worrying about severe ME patients not having access to treatments, you need to help make useful and non-harmful treatments available to ME patients.

We do NOT support the misrepresentation of people with M.E. as mentally ill.

Then what is your justification for supporting the use of GET and CBT as primary "treatments" for ME patients? Are you really not aware that the form of CBT used in PACE and many (most?) clinics across the UK is based on teaching the patient to stop seeing themselves as ill? Are you also unaware that GET is based on the premise that we supposedly have a psychological fear of exercise? That GET was first incorporated into CBT with the caveat that the physiological aspects are too insignificant to have any physical impact, but rather it is intended to get us to believe that we aren't really reacting poorly to exertion?

Have you thoroughly read any research at all regarding ME?

 

[A.B.]

@Valentijn perhaps you could add a summary of why the PACE trial was flawed and contrary to the conclusions of its authors, doesn't actually support the claims of CBT and GET being useful interventions. You wrote a very nice summary some time ago - maybe just link to that? I don't remember where it was though.

 

[Gingergrrl]

I am not in the UK but was wondering how this organization would justify the abnormal results on the two day CPET tests that are found consistently in ME/CFS patients by the Workwell Foundation (and by other doctors.). How are they able to get away with ignoring real scientific evidence of physical dysfunction?

 

[CantThink]

Clare McDermott and George Lewith will attend the Symposium to present their recent findings on the lack of NHS service provision for those most severely affected by M.E. We are aware of their other research and the concerns that have been expressed about some of this. But their focus for our Severe M.E. Symposium is the study published in the BMJ Open in July.

That study is not telling us anything that sufferers didn't already know - service provision of what? CBT/GET which are the only things on offer... Thanks, but no thanks. If all AfME is going to do is continue to push CBT/GET and try to get it provided for those who are housebound/bed bound, that's a travesty. I think that severe sufferers are actually lucky to not have such harmful 'therapies' applied to them. There are many of us who have become significantly and devastatingly worse as a result of these interventions.

You mention people having improved via the administration of CBT/GET - this is because the criteria for referral to a CFS service is not specific enough and includes patients who have chronic fatigue as a result of other health problems, health problems that do benefit from addressing exercise intolerance and fatigue. If we, as patients, can identify people who do not have actual M.E. and who have been given a CFS or CFS/ME diagnosis, how come the NHS and your organisation finds it so difficult to distinguish?

A massive part of the problem are the criteria being used, which happen to be the most inclusive and least specific. I know of people with other health problems such as GAD, hypothyroidism, and fibromyalgia to name a few, that could easily fall into the wastebasket CFS diagnosis. Yet, interestingly none of them have done, because they do not live in the UK and have to put up with the negligence of the NHS who seem to love to lump anyone who is TATT (tired all the time) and finds exercise difficult into the CFS bracket.

Where's the testing for co-infections, autonomic dysfunction, endocrine problems, neurological abnormalities? Dealing with these issues and treating them gives sufferers a chance at improved ability, but we can't get this type of treatment on the NHS (due to being smeared with the label CFS/M.E. and the NHS's adherence to the NICE guidelines advising to not test us any further). So we are left with 2 choices: either having to borrow money or fundraise to pay for our own tests/treatment, or go without and continue to deteriorate.

You say: the cause of M.E. remains unknown... Err yes, because what research is being done that is funded and supported by your organisation to look for a physiological cause? If you don't look, you won't find.

 

[Valentijn]

@Valentijn perhaps you could add a summary of why the PACE trial was flawed and contrary to the conclusions of its authors, doesn't actually support the claims of CBT and GET being useful interventions. You wrote a very nice summary some time ago - maybe just link to that? I don't remember where it was though.

1) PACE primarily used Oxford chronic fatigue as the requirement for recruiting patients. "Fatigue" must be the primary symptom, which would exclude ME patients who consider PEM, pain, OI, etc, to be their primary symptom, or who consider those symptoms to be a more precise label for the fatiguing aspects of their illness.

2) No objective measurements were used as primary outcome measurements. "Recovery" was assessed based solely upon subjective measurements (questionnaires), in a population group which they ironically believe is not capable of accurately assessing their own health.

3) One objective measurement (actometers) was dropped entirely, and the 6-minute walking test was consigned to be a secondary measurement, hence not used in determining recovery. Thus patients who could walk no further than they did at the start of the trial were still classed as recovered.

4) Objective outcomes which could have been quite useful in determining the success of the therapies were not used to determine "recovery". Unmployment, use of disability benefits, etc, did not improve after the trial, which would suggest that CBT and GET are a financial failure in addition to a therapeutic failure.

5) "Recovery" was re-defined to mean "a little self-reported improvement". Few patients scored themselves as feeling "very much better", with most choosing a rather more modest option. Chalder Fatigue Scale scores were converted into a different scoring system at the end of the trial, so can't even be reasonably compared to the baseline. The scores for a physical functioning questionnaire could have dropped by 5 points and still have been counted as indicating "recovery".

There's probably more, but those are the major ones I can think of at the moment

 

[A.B.]

There's probably more, but those are the major ones I can think of at the moment

Thanks! In the meantime I found what I was looking for. @Action for M.E. please read this carefully:

In PACE they declared that one standard deviation below the mean for SF-36 questionnaire Physical Function (PF) subscale is sufficient to show recovery from disability. But SF-36 PF doesn't have a normal distribution, which anyone would learn in Statistics 101 is required for a standard deviation to be determinable and/or meaningful.

The result is that in the PACE study they declared a score of 60 means a patient is "recovered", even though something like 95% of a healthy working-age population scores 100 (maximum score) on the SF-36 PF. Hence by badly mangling statistics, they made it look like a score of 60 is normal, even though people actually have to be pretty ill or very old to score that low.

To make things even more absurd, CF patients were required to have a score of 65 or lower on the SF-36 PF subscale to be eligible to participate in the trial. Hence someone could be disabled enough to join the trial with a score of 65, become MORE disabled during the trial and have their score drop to 60, yet still meet the criteria for recovery.

There are many other outrageous issues with PACE, but this particular one is 100% governed by the rules of statistics, and the PACE trial authors made a huge and clear-cut violation of those rules. Hence it's a very useful angle for pointing out how badly flawed the trial was.

http://forums.phoenixrising.me/inde...ve-data-incl-on-pace-trial.33326/#post-514978

 

[CantThink]

For reference, AfME's list of current research funding & support which they supplied me with in response to my email:

http://www.actionforme.org.uk/get-informed/research/our-research-related-activity

Along with the following response:

You ask in your email what sort of research we support.

We support researchers who conduct high-quality, evidenced-based, peer-reviewed research, and are currently funding a number of biomedical projects, among them a study comparing patterns of mitochondrial DNA variation in people with M.E. and healthy controls, and a study looking at the role of immune responses in M.E.

 

[Min]

AfME said

As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed to find why it may benefit some people and not others.

Hasn't there been more than enough enough money wasted on this, at the expense of biomedical research? PACE and FINE both failed to show evidence of improvement and cost the taxpayer £6.5 million. We are still waiting for the PACE researchers to release their data.


AfME said

We do NOT support the misrepresentation of people with M.E. as mentally ill.

Then please explain your involvement in Prof White's PACE, and why you are taking over the CFS foundation's pain study led by Prof White, and why you work with him as members of the Collaborative. He believes, with no scientific evidence whatsoever. myalgic encephalomyelitis to be a Somatic Distress Disorder. He is on record as calling myalgic encephalomyelitis an 'illness belief' despite it having being classified as a neurological illness since 1969.

He and the rest of the Wessely school of psychiatry are the reason we have had no effective treatment for the past thirty years.They are also the reason we are belittled when we try to access appropriate medical care.

It is difficult, AfME, to believe what you say when what you do appears to contradict it.

 

[Purple]

To see the PACE trial's analysis and some of the many flaws, please have a look at the Evaluating PACE website:
http://evaluatingpace.phoenixrising.me/homepageanim.html

Or have a look at the ME Analysis YouTube channel where there are several short videos that show some of the problems with the trial; the videos are well made, easy to follow and range from 2:30 to 13 minutes in duration:
https://www.youtube.com/user/MEAnalysis/videos?flow=grid&view=0&sort=da

 

[Min]

It is to be hoped that AfME's symposium does not mean that Prof Peter White (with whom they appear to have a close relationship) and colleagues have severe myalgic encephalomyelitis in their sights.

The severely affected are already locked into a living hell without being further tortured with graded exercise etc.

 

[Sidereal]

As surveys by charities including Action for M.E. and the ME Association acknowledge, CBT, GET and GAT have benefit for some people with M.E. while others experience negative effects as a result. Further investigation is needed to find why it may benefit some people and not others.

Why is further investigation needed? The risk-to-benefit ratio simply does not add up. These "therapies", when they benefit people (which is rare), have a marginal effect at best. They also, according to the charities' own surveys, make a substantial percentage of patients worse. Anecdotally, GET has a proven track record of turning mild patients into severe bedridden/housebound patients. ME forums/support groups are littered with casualties of GET. Why should we spend more of the extremely limited research funds and manpower on investigating these therapies when there are other treatments we could be studying?

If, hypothetically, CBT/GET/GAT were highly effective for a subset (if, say, their efficacy were comparable to that of rituximab where some people return to 100% premorbid functioning), you MIGHT seriously consider whether the risk of further trials is justified given that GET also makes many people worse and we have no way of predicting who is going to be made worse so we have no way of studying only the subset that isn't at risk of a severe and permanent worsening in their condition. But in reality, CBT/GET isn't highly effective. It's not like chemotherapy where some people achieve full remission and the extreme risks may be justified. We're talking about treatments that produce a modest change in questionnaire-taking behaviour in samples of people with unexplained fatigue with high prevalence of psychiatric comorbidity. Even one bona fide ME patient becoming severely ill as a result of such "research" is an unacceptable risk.

As an aside, in my 20 years of ME, I have met only one person who attributed a substantial improvement in their condition to CBT/GET. He was a psychologist I used to work with. He was a mild patient able to still work full time but with difficulty. Objectively, he appeared constantly tired on observation and was crashing frequently on the weekends according to self-report. He also had polyuria which was being investigated by the GP. Things being what they are, the chances of a GP figuring out he had diabetes insipidus were nil (even though many ME patients are deficient in vasopressin, this information is not in their textbooks since ME is not a real disease) so he was being investigated for things he doesn't have like prostate issues. He also had frequent heart palpitations, insomnia requiring prescription sedatives from the benzodiazepine class, intolerance of coffee, alcohol etc. Yet he felt his life had been greatly improved by psychology and hence decided to become a psychologist. Everyone here can judge for themselves if his beliefs were aligned with reality.

But I digress. The crucial point is the one Ginger brought up. Any purported treatment for any disease must demonstrate biological plausibility. Even psychiatric treatments attempt to do this. In light of research using cardiopulmonary exercise testing by exercise physiologists in the US, which confirms what ME patients have been saying for decades (i.e. muscle exertion/energy expenditure causes a flare in ME symptoms and DECREASES the body's ability to create energy in the post-exertional state), any study purporting to show a benefit of exercise in this disease, no matter how marginal, can be tossed out as invalid seeing as the very principle of a graded increase in activity contradicts the core pathophysiology of this disease.

 

[JAM]

Then maybe together we can suggest that any and all advocacy agencies for ME drop any positive reference to CBT/GET as it is NOT treating any symptoms of ME. If someone with ME is truly not coping well and has no-one to talk to about it they can be offered the option of CBT through their GP/PCP who has been properly taught that the ME is biological and is not what is amenable to CBT.

I think it would be good to offer CBT from the beginning, not for the physical cause or as a cure, but as a tool to help one navigate living with a chronic illness. I doubt there are many of us who wouldn't benefit from proper treatment of the stress caused by living in pain, dealing with the social rejection, and the other associated PTSD that seems to come with a long term illness. It isn't a talk therapy, so wouldn't serve well in the situation you mention. It is about learning tools to deal with negative stimuli. So, I would be on board getting together and creating a document that promotes the proper use of CBT and condemns promoting it as a cure.

What would also be really helpful is to have a list of organizations that promote CBT properly, and one that promoted it as a "cure".

 

[JAM]

Are you serious AfME? You really think the severely affected will somehow be helped by scientists who push NLP?

Many of us were pushed into severe disability by graded exercise. The last thing we need is yet more psychobabble.

That is the kind of thing their site needs to be inundated with.

 

[JAM]

It is to be hoped that AfME's symposium does not mean that Prof Peter White (with whom they appear to have a close relationship) and colleagues have severe myalgic encephalomyelitis in their sights.

The severely affected are already locked into a living hell without being further tortured with graded exercise etc.

Maybe letting them know that you don't approve of their relationship would also be helpful?

 

[CantThink]

I think it would be good to offer CBT from the beginning, not for the physical cause or as a cure, but as a tool to help one navigate living with a chronic illness. I doubt there are many of us who wouldn't benefit from proper treatment of the stress caused by living in pain, dealing with the social rejection, and the other associated PTSD that seems to come with a long term illness. It isn't a talk therapy, so wouldn't serve well in the situation you mention. It is about learning tools to deal with negative stimuli. So, I would be on board getting together and creating a document that promotes the proper use of CBT and condemns promoting it as a cure.

What would also be really helpful is to have a list of organizations that promote CBT properly, and one that promoted it as a "cure".

Personally I'd rather do a mindfulness course for chronic illness - not necessarily M.E. specific. Plus counselling for dealing with the feelings that result from being so isolated, dependent and grieving.

Edited to add: I have asked for this type of help from my GPs but was told I'd have to pay for it, and I couldn't afford it.

 

[Min]

Maybe letting them know that you don't approve of their relationship would also be helpful?

We have been letting them know for years that their relationship with Prof White and his colleagues is not helpful to us. and many including myself are doing so now. It apparently falls on deaf ears.

 

[Wildcat]

.

@JAM and all,

There have been many many hundreds of letters written to Action for ME (AFME) over decades, stating what AFME is doing wrong, in detail.... and stating what the patients want AFME to do instead. There have been complaints to the UK Charity Commission also, enough that the Charity Commission note an excessive number of complaints about AFME over the years.

Suggesting to British ME sufferers and campaigners that it would be helpful to let AFME know what they are doing wrong misses the issue completely. And is a little infantalising. Because its been done over and over.

AFME remain unaccountable, and haven't changed their alliances with the psychosocial school, whilst catering as a charity primarily to fatigue sufferers, whilst letting CCC and ICC ME sufferers continue to rot, and worse.

.AFME backed the UK NICE Guidelines for diagnosis and treatment of ME, against the wishes of the vast majority of the patients.

AFME took part in the CBT/GET PACE Trial, against the wishes of most of the patients.

It was not at all surprising to see AFME cosying up to the Southampton researchers
(George Leweth and Clare McDermott), who are studying NLP modelling instead of doing what the patients want. NOT more NLP - but Relevent bioresearch.


I was a paying member of AFME the charity for a number of long and frustrating years, in which AFME failed to take the reality of severe/very severe ME seriously, but instead shoved coping techniques down my throat and wittered on about 'positivity'. What was badly needed was medical and practical care. Not more accursed positivity!

There is a point at which being flooded with advice to seek emotional or psychological support becomes actually abusive, when the basics of physical care and medicine are being denied to the severely sick person.
.


.

 

[Gingergrrl]

I am saying this in sarcasm (as I know it will never occur) but if AFME really wanted feedback on how to help the severe sufferers, then they could donate some of their funds to help the End ME/CFS Project which has recently been started by OMF and NIDA.

 

[CantThink]

It apparently falls on deaf ears.

Or maybe they don't care? The charity seems to economically function and the staff and CEO still get their pay cheques regardless of our opinion/s.

 

[JAM]

We have been letting them know for years that their relationship with Prof White and his colleagues is not helpful to us. and many including myself are doing so now. It apparently falls on deaf ears.

Ugh. How frustrating.