I have just re-read the AfME statement. I have picked out the bits that are problematic in my opinion:
the models of GET and CBT used in the PACE trial assume that M.E. is perpetuated by deconditioning (lack of fitness); however, significant studies disagree that deconditioning is the cause of M.E. and/or CFS, and is in fact a consequence of the condition.
For this reason, Action for M.E. does not support any therapeutic approach that assumes M.E./CFS is based on deconditioning.
PACE also used the 'fear avoidance' model in the CBT arm of the trial.
Deconditioning
may occur as a consequence of the condition - in mild cases this can be minimal.
My problem is not with the model but with the treatments. Just saying the problem is the deconditioning model leaves the door open to those who now say it's central sensitisation that causes it and that CBT/GET can treat this by gradually desensitising the patient to exercise (I think the Mayo clinic uses this model to justify GET).
If we simply say the problem is the model is wrong, that gives them leeway to just make up another model and continue using the same ineffective and dangerous treatments.
It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.
This is an apology for making us feel you have caused harm. It is not an apology for the undoubted harm you have caused. It would be more appropriate to apologies for harm done, not for upset feelings.
Our position on recommending treatment and management approaches for M.E. is set out below and, over the coming months, we will review all our printed and online information to reflect this. This is no small task, but one that the team will prioritise and complete as quickly and comprehensively as we can.
This is simply not good enough. You implicitly acknowledge that you have misinformation on your site, but seem to be content to leave it there to cause further harm rather than taking it down immediately. Better a blank page than a page full of harmful information.
It could be as little as a day's work to go through and delete any dubious statements from your website and place instead holding statements saying the site is undergoing significant review.
For example, on treatment, all you need as a holding statement is a couple of sentences simply recommending:
1. listening to your body, resting when you need to, and carefully pacing your activities,
2. avoiding treatments that involve increasing levels of activity which have been found to be ineffective and many patients find they make their condition worse.
You need to get off the fence on this very clearly and quickly. No more 'active pacing' or 'activity management' which are GET in disguise.
We fully support treatment approaches which:
- aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted
- put the person with M.E./CFS in charge of the aims and goals of the overall management plan.
The first part of this is GET and completely wrong. There should be no suggestion that a treatment approach involves attempting to increase activity levels. It should be all about staying within the energy envelope. The problem all patients I've talked to have is in cutting back enough to avoid crashes, and managing their lives to stay within the envelope, not needing to be encouraged to do more.
The second part sounds good, but putting a patient in charge, if the patient hasn't been fully informed about what helps and what is harmful, is simply passing the buck and blaming the patient if they get worse. I would want to see a statement here about fully informing the patient about how to pace using tools such as step and heart rate monitoring, and activity and symptom diaries so they can make informed decisions about how to manage their lives to avoid worsening symptoms.
We would like to see:
- clarity from specialist NHS M.E./CFS services about the approaches they offer, and the theoretical basis behind them, to help patients make informed decisions about the treatments they are being offered
- health services and commissioners working directly with people affected by M.E. to develop patient-led services
- good-quality, independent evaluation of the programmes being offered by specialist NHS M.E./CFS services.
I would like to see all current services scrapped and replaced by a physician led service with specialist nurses to help patients with pacing and symptomatic treatment based on the model used for other serious chronic physical conditions such as Parkinson's Disease, asthma and diabetes. See
my article here.
It is all very well just asking clinics what they do - they will tell you what you want to hear. And involving patients is only sensible if those patients are fully informed about the research and the pitfalls of sticking with the present system. It is all too easy for a group of ''patients'' who may or may not have ME and who have been brainwashed by the likes of the Lightening Process to be rallied by a local LP practitioner and to make representations to the local clinical commissioning group that this is what should be commissioned in their area. If AfME is to be any real use it needs to take a lead on recommending a better model than the current therapist based CFS and IAPT services. We should be moving away from that model altogether. It has failed us.
In this context I would also point you to Professor
@Jonathan Edwards' recent
letter to the head of the MRC, particularly this paragraph:
In the longer term, PACE continues to have a disastrous effect on clinical care, equally relevant to research. It seems likely that treatments are being provided that do not work and cause distress. PACE is a major prop for the £1B expansion of so-called evidence-based therapies proposed now not just for ME but for any unexplained symptoms. The more I see the more I suspect none of this ‘evidence’ means much. Even Simon Wessely, who helped set PACE in train, is looking on, like the Sourcerer’s Apprentice, as PACE is used to underpin subcontracting care to providers whose staff are not even formally trained in CBT, let alone have useful knowledge of the illness. Commissioning groups are dispensing with physician contact. Whereas in the past physicians like Stephen and I could gain experience with the clinical picture and ponder possible causes we are faced with a future in which nobody even knows what the problem is that requires scientific input.
Finally, for the sake of patients, AfME should break all ties with BACME and not make any statements in support of its approaches to treatment.
It should also dissociate itself fully from Esther Crawley and make a statement about the fact that her research methodology is as bad as, and often worse than PACE. For example, you should be warning parents with children about the pitfalls of the approaches being used in the FITNET trial and pointing out the flaws in the claims that the Dutch study showed the method being tested in FITNET to be effective.
AfME should also not use therapists to educate doctors about ME - this should be done by medical doctors with up to date knowledge of research, and by expert patients who can tell the story from a patient's point of view.
