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

[jimells]

It's impossible for me to take seriously anybody promoting NLP. I'd never heard of it before, so I looked it up on Wikipedia.

Even after taking into account the typical Wikipedia distortions, it's obvious that NLP doesn't even rise to the level of psychobabble. It's pure marketing. The inventors of this marketing scheme to sell seminars have spent more time and effort on suing each other than they have on any kind of research.

Anybody promoting this snake oil should be laughed off the stage and out of the building. I'd put more faith in a newspaper astrology column.

 

[A.B.]

This NLP nonsense is just another attempt by deluded psychobabblers to negotiate a psychological treatment. The goal of the negotiation is to find a psychotherapy the patient can accept. Behind this there is the mistaken belief that patients reject psychotherapy not for rational but for emotional or ideological reasons. That is why so much effort goes into misleading the patient to believe that it's not a psychotherapy, which begs the question how dumb they think we are because it's pretty obvious what it is.

 

[Scarecrow]

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.

Either way, these should be something offered without pressure to accept and lies being told about efficacy.

 

[Min]

This NLP nonsense is just another attempt by deluded psychobabblers to negotiate a psychological treatment. The goal of the negotiation is to find a psychotherapy the patient can accept. Behind this there is the mistaken belief that patients reject psychotherapy not for rational but for emotional or ideological reasons. That is why so much effort goes into misleading the patient to believe that it's not a psychotherapy, which begs the question how dumb they think we are because it's pretty obvious what it is.

The tragic thing for patients is that it is actually harming us, particularly GET, and still this nonsense is all we are offered.

If AfME intend this symposium as more than a mere PR exercise they would be loudly condemning the coercing of patients into accepting psychobabble,, not intending to add to the problem by seemingly promoting NLP for the severely affected.

 

[Wildcat]

.
The point is......

That CBT for ME in Britian is not just something that is offered.

CBT has been instituted as the be all and end all of ME treatment according to UK National Health policy (along with Graded Exercise/GET, or Graded Activity disguised as pseudo pacing).

Please note the euphemisms for ME in the UK (medically unexplained symptoms/MUS and Funtional Somatic Syndromes) which were invented by the British Psychiatrists who for the last 25 years have defined, controlled and directed the ME research and treatment policy in Britain,


For other diseases CBT is Offered as one of several aids to coping.

But in Britain CBT (and GET) for ME is engraved into National Policy As the only Treatments, via the NICE Guidelines (NICE - National Institute for Clinical Excellence).

.

 

[Bob]

However, we do know that there is absolutely no high-quality evidence base for treating the most severe form of M.E.

Not only that, but there's no high-quality evidence base for treating any form of ME with CBT/GET/GAT. Or, if there is, I've missed the research and would appreciate AfME highlighting it for me.

The FINE trial demonstrated that CBT/GET-based therapies fail to benefit severely affected patients. Not only did the tested therapy ("pragmatic rehabilitation") fail to benefit the patients, but the CBT/GET-based therapy created an unfortunate and untherapeutic scenario in which therapists and patients were fighting against each other rather than working collaboratively; The therapists became so frustrated with the patients' refusal to engage with the therapy (because it was so utterly inappropriate) that the therapists began to view the patients as adversaries. The published official review of the FINE trial contained the notorious quote, indicating the attitude of the therapists towards the patients: "...the bastards don't want to get better." This unfortunate scenario was clearly caused by the inappropriate therapy, and the training, rather than the therapists being intrinsically ignorant people.

This is this sort of untherapeutic, and harmful, situation that people on this forum are all to familiar with, and simply want to avoid. Severely affected patients are very vulnerable, and should not be subjected to therapist's false illness-beliefs, and false expectations, based on a profound misunderstanding of the illness.

The PACE trial demonstrated that no more than 15% of (a broad selection of ill-defined chronic fatigue) patients responded to treatment with CBT or GET, in a study that was non-blinded and failed to take account of response bias and placebo effect. Thus, even the official published 11-15% response rates are questionable for so many reasons. Considering that recruitment for the PACE trial failed to use the Fukuda or NICE criteria, and therefore failed to recruit a representative or well-defined cohort of CFS patients, then a 15% response rate doesn't tell us anything, even if we take that figure at face value. It should also be noted that CBT/GET failed to lead to clinically useful improvements in objectively measured physical disability. CBT and GET also failed to make a difference to all other objective measures, such as employment.

In a large review of England's NHS treatment clinics, CBT and GET failed to improve physical function in CFS patients. (The effect size for improving fatigue scores was similar to the PACE trial.) The control group was clinics that offer graded activity. If overall outcomes were worse than the PACE trial, then this suggests that the marginal effects seen in the PACE trial are even worse in NHS clinics. It also indicates that ME patients experience absolutely no additional improvements in disability after treatment with CBT/GET in real-world settings. So much for CBT/GET being rehabilitative treatments.

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.

I'm deeply concerned that AfME seems to be advocating CBT and GET as beneficial therapies for ME, and also advocating further investigations into these therapies.

The best evidence that we have is from the FINE and PACE trials, and the national outcomes database study of NHS clinics in England. These simply indicate that the benefit from CBT/GET is marginal, at best, and non-existent in terms of objectively measured outcomes, such as physical disability, employment, and welfare benefit claims. Obviously, the FINE trial was a complete failure, which is always ignored by CBT/GET proponents. And the national outcomes database study demonstrated a lack of efficacy in terms of improving physical function.

If the PACE trial benefited no patients, on objective measures, why investigate the therapies further? If the PACE trial indicated that no more than 15% of patients benefit (with all the weaknesses of the trial described above) then why investigate further? If the national-outcomes-database study indicated that the function of CFS patients does not improve in NHS settings, after treatment with CBT/GET, then why investigate them further? If the FINE trial demonstrated that CBT/GET are ineffective, then why investigate them further?

I wonder what type of CBT AfME is advocating for ME patients? Is it the type that supposes it can 'treat' and 'reverse' the illness (i.e. that supposes that ME patients are ill because of a maladaptive personality disorder), or is it the type that helps any patient with chronic illness to cope and adjust to the situation? If it's the latter, what does AfME do to distinguish the two, when discussing the therapies with patients and authorities?

And how does AfME interpret the supposed therapeutic actions of GET? Does AfME agree with the proponents of GET that CFS/ME is caused and perpetuated by maladaptive avoidant behaviour and deconditioning? And what is AfME's opinion regarding such therapy accidentally being prescribed to an ME patient with acute symptoms for which additional exertion is not appropriate, but could be dangerous? (When I experience a sudden-onset flare up, the sudden increase in symptoms - e.g. join pain, exhaustion, brain fog, etc. - clearly have not come about because of a sudden episode of deconditioning, and I know - from bitter experience - that I need to stop, rest, and then slowly pace myself after an acute flare-up. Stopping and resting are vital components of my symptom-management, and pushing beyond my safe boundaries is dangerous for me. So I find the potential for the inappropriate use of GET to be extremely concerning. Also, the very nature of the therapy, and the philosophy behind it, sets up a potentially harmful adversarial scenario between therapies and patient, as demonstrated in the FINE trial, whereby the therapists have a total lack of insight into the illness and the needs of the patients.)

 

[Bob]

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.

I agree with others here, that severely affected patients should not be subjected to the treatment guidelines that NICE promotes. Many of us know that such a situation has the potential to be harmful for us, in so many ways. There is absolutely no point in extending the current treatments based on the NICE guidelines, to severely affected patients. Our individual and collective experiences inform us that it is more likely to cause harm than benefit patients.

AfME seems to be deaf to the complex issues highlighted in this thread, about CBT/GET, and I do find that worrying. Perhaps AfME should listen to these concerns?

As our CEO Sonya Chowdhury says in a recent blog post, “I fundamentally believe that the only way to make any real progress is to unite to collaborate. We don't have to agree about some things or even most things (I am not trivialising the importance of these differences, I hasten to add). Surely we can find a way to work together, in spite of our differences? Speaking at the recent UK CFS/M.E. Research Collaborative conference, Prof Ian Lipkin challenged notions about criteria and exclusion, and encouraged the community to pull together because there is strength in numbers, a louder voice that cannot be ignored.”

I understand the reasons for wanting to be inclusive, but unfortunately this position seems to fail to understand how patients, such as ourselves, feel sidelined by such inclusivity. The inclusivity can actually have the opposite effect: We (patients, including very ill patients) don't have a voice, whereas certain highly successful members of the medical profession are highly influential, have high status, and do indeed have a very loud voice. We are voiceless, and need protecting and supporting by our patient organisations such as AfME. Many of us do not believe that some of members the medical profession have our best interests at heart; Instead, we feel that they promote only their own interests. By collaborating with certain aspects of the medical profession, AfME gives further validity to their status and opinions, and by not rigorously challenging them, we feel that we are are undermined (on so many levels) by an organisation that is supposed to be supporting us. Not acknowledging, and not appearing to understand, these problems gives the appearance (rightly or wrongly) that AfME is not on our side, and this sets up a division, which is the opposite of the inclusivity that AfME purports to desire. It sets up an exclusive situation, whereby patients are the ones who feel sidelined. So, unquestioning inclusivity actually has the opposite of the desired effect, whereby patients are the ones who feel excluded. AfME seems deaf to this situation.

 

[Bob]

During periods when I've been at my most ill, I've wanted/needed inpatient facilities to be available via the NHS - I've needed a sort of palliative care, if that's not an inappropriate description - Not a forced rehabilitation, but a safe and benign space whereby I could be allowed complete rest and quiet - to be given space to allow my illness to take its course in a safe, quiet and supportive environment. I would like such facilities to include a multi-disciplined team of physicians (i.e. dealing with issues such as severe pain, heart issues, circulation issues, autonomic dysfunction issues, distress, and other weird and wonderful symptoms/complications such as oral thrush, IBS etc.) (Also, of course, a full range of tests to be carried out, to rule in or out any other illnesses.) On such occasions (until effective biomedical treatments are available), I'd like to simply be allowed to live in comfort; to be cared for with care and compassion, by staff with a deep understanding about the nature of the illness; to be allowed a period of time during which I had no responsibilities but could feel safe and looked-after without any pressures or expectations by staff with the deepest of respect, insight and sympathy. I've had a few periods of my illness where this would have been a great comfort to me. Inpatient facilities would be so useful during such times (rather than home-care), because home-situations are not set-up for peace, quiet and a total lack physical ability or self-sufficiency.

I'm quite ill at the moment, so I can't focus on much, but I might try to formally submit some of the above.

 

[jimells]

AfME and the psychobabblers remind me of the Dummycrats and the Repugnants (Republicans) in the US. I personally loath the Democrats even more than the Republicans. The smiling Democrats pretend to be helping working class people while stabbing us in the back. As much as I despise the Republicans, at least they are honest, and even brag about, wanting to stick it to poor people.

 

[NK17]

This NLP nonsense is just another attempt by deluded psychobabblers to negotiate a psychological treatment. The goal of the negotiation is to find a psychotherapy the patient can accept. Behind this there is the mistaken belief that patients reject psychotherapy not for rational but for emotional or ideological reasons. That is why so much effort goes into misleading the patient to believe that it's not a psychotherapy, which begs the question how dumb they think we are because it's pretty obvious what it is.

NLP is similar to a Ponzi Scheme in the realm of psychobabblery and unfortunately some people are going to fall for it.

 

[Min]

AfME say

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.

Th study appears to presume that the severely affected will somehiw benefit from ' activity management, CBT and graded activity. ' - the very same ridiculous treatments that push many of them into severe disability in the first place.

It's as if AfME have their fingers in their ears and are chanting 'La la la' to drown out what the severely affected and their carers are trying to tell them. If I were Prof White, AfME is exactly the fatigue charity I would want in existence.

 

[CantThink]

Either way, these should be something offered without pressure to accept and lies being told about efficacy.

I agree, and quite frankly I'd rather the money and research budgets were spent on providing me and everyone else with physiological testing and treatment.

 

[Undisclosed]

As our CEO Sonya Chowdhury says in a recent blog post, “I fundamentally believe that the only way to make any real progress is to unite to collaborate. We don't have to agree about some things or even most things (I am not trivialising the importance of these differences, I hasten to add). Surely we can find a way to work together, in spite of our differences? Speaking at the recent UK CFS/M.E. Research Collaborative conference, Prof Ian Lipkin challenged notions about criteria and exclusion, and encouraged the community to pull together because there is strength in numbers, a louder voice that cannot be ignored.”

Lipkin encouraged the community to pull together and speak with one loud voice. We have spoken with very loud voices -- over and over and over and there is one thing we all agree on -- patients do not want CBT offered to them as a primary treatment for ME because ME is not a psychological condition. It's that simple.

What you should be doing is representing the majority of patients and demanding that the NICE guidelines change their guidelines related to ME. What you should be doing is stating clearly that CBT is not a primary treatment. If you claim you are speaking for people with ME, then speak for us -- with conviction, rather than saying we should agree to disagree because we aren't agreeing to disagree.

I fundamentally believe that the only way to make any real progress is to unite to collaborate.

Then collaborate by listening to the patients or there will be no hope of uniting.

 

[Gingergrrl]

I have really followed this thread and feel so conflicted for everyone in the UK re: how to communicate with AFME. If patients have tried to communicate what they need for years on end and it is falling on deaf ears, at what point do you stop communicating with this particular charity vs. continuing to hope to change them?

I don't know the answer but it is making me think of that analogy that if someone needs to buy a quart of milk but keeps going to the hardware store over and over again trying to find it yet it is never there. At some point they either give up completely, or they go elsewhere to find the milk.

Maybe this charity is like that and we are all wasting precious energy trying to change them when they have no intention of changing? I am not trying to be negative and believe in advocacy until the bitter end. What do you guys in the UK think?

 

[Valentijn]

I have really followed this thread and feel so conflicted for everyone in the UK re: how to communicate with AFME. If patients have tried to communicate what they need for years on end and it is falling on deaf ears, at what point do you stop communicating with this particular charity vs. continuing to hope to change them?

On a similar note, is there some way for members to force a change of leadership? Or are they completely powerless, with their only option in a major dispute being to end their membership?

 

[Min]

On a similar note, is there some way for members to force a change of leadership? Or are they completely powerless, with their only option in a major dispute being to end their membership?

AfME's only full members are the self appointed executive. All others are merely associate members.

 

[CantThink]

Maybe this charity is like that and we are all wasting precious energy trying to change them when they have no intention of changing? I am not trying to be negative and believe in advocacy until the bitter end. What do you guys in the UK think?

I agree, and I think that's probably partly why we have multiple M.E. charities in the UK. We can then support the ones that represent our views and support/fund biomedical research.

I've never previously expressed my feelings to AfME, so I felt this was a good opportunity to do so. Having said that, I don't have much confidence in them truly taking on board our points of view, so it seems a bit pointless to continue expending energy on trying to have dialogue with them.

 

[Snowdrop]

I think the charities and medical institutions don't feel very threatened by a bunch of really sick people with no energy.

I have been working toward getting my family members to better understand the situation (it's a balancing act. I don't want this to be my only interaction with them and I have very limited energy). But then they can better share what they know with the people in their lives.

It's a slow process but I think worthwhile. I don't have a face book account so I use theirs. My daughter tweets things when I ask and has started to tweet things she finds without prompting. I'm hoping over time that they might find other ways of expressing their displeasure. Unfortunately as a family none of us is particularly what could be called high energy.

So if taking part in things like this becomes a trip to the hardware store for milk we need to start planning for alternatives.

 

[Alison2]

I think we needed to and need to voice our opinions - as a severely affected sufferer i find it real scary and alarming that AFME [who don't have a very good track record ]appear to be wanting to start focusing on severe m.e

 

[ukxmrv]

On a similar note, is there some way for members to force a change of leadership? Or are they completely powerless, with their only option in a major dispute being to end their membership?

AFME did once try to change their name to add Fatigue (I think it was something like fatiguing illnesses) but the UK Charities commission stopped them.

A complaint to the Charities Commission resulted in AFME being told to tell ordinary members that they were in fact "subscribers" with no voting privileges or any power.

http://www.thirdsector.co.uk/action-membership-row/governance/article/807171

The rot in AFME is in their Trustees. One of whom was the "patient representative" at Barts Hospital before he became a Trustee. Trustees appoint Trustees. The Trustees appointed a CE called Chris Clark who openly supported the Psychiatric Lobby.

AFME though has changed in the last year. I have not been to their AGM and I'm not sure what changed about the election of Trustees. There was a thread from last year which says

"
The results of elections for provisionally selected Trustees will also be announced and those voted for by Supporting Members will be formally appointed to the Board.
"
So it sounds as if the Trustees are pre-selected still. Until there is a major change of the current Trustees then nothing will change. I think that Prof Philby may be a trustee now but he is probably still outnumbered by Trustees who have unhelpful beliefs in CBT, GET, PACE, treatment and recovery.