Besides my
initial comments, I have not been able to sink my teeth much further into it either. Basically bad timing with life admin stuff outside the forum, plus a short window of time to comment.
That said, I have read most of the main document, and some of the threads looking at individual sections of it. (Big thanks to all those who contributed to those threads.)
It is a very important document and huge step forward for us, no doubt about that. If we can win in the UK, we will have basically won overall. Thanks to NICE for (finally) doing this, and for all those who made constructive contributions, including the NICE evidence evaluation team, and Jonathan Edwards' important independent expert advice. Particular thanks to the patient representatives on the committee for what was a protracted demand on their time and energy, and no doubt at times a difficult and frustrating task.
As far as criticisms go, my only major criticism is the undue heavy emphasis on management and planning.
It is out of proportion to the current (reliable) scientific and clinical knowledge base, not to mention sheer common sense. Frankly, it seems almost intrusive and invasive, and smacks too much to me of certain out-of-touch clinicians and schools of thought trying to hang onto their unjustified status, power, and of course income.
I really don't see how this stuff helps ME patients. Apart from any other reason, the level of detail seems an awful demand on their time and energy, and potentially a serious distraction, right when they don't need it, and for so little return. The degree, at least, of 'active' management by clinicians just seems like activity for the sake of activity.
The worst thing I think any clinical advice or management can do is give false hopes about improvement and recovery, and especially any suggestion that it depends on the patient's 'attitude' and 'will power' and 'motivation'. There is no evidence of any such deficit in patients (arguably the contrary), so any suggestions or implications along those lines need to be ruthlessly expunged from the guidelines.
The ugly truth at this stage, and for the foreseeable future, is that we just don't know much for sure about optimal management, beyond the practical lived experience of millions of patients. The guidelines must accurately reflect that situation.
IMHO, the advice given to newly diagnosed patients
* should be something like:
1.
You have this diagnosis, with these broadly agreed characteristics of the disease (most notably and critically PEM, and its relationship to exercise/activity, mental and physical).
2.
It is a very serious chronic disease, that can have profoundly adverse direct and indirect effects upon your life.
3.
We currently know very little about the underlying process, nor how it came about (though infections probably have a major triggering role, at least.)
4.
We do not have any effective treatments, let alone cures. One thing we are quite sure of now is that it is not a mental/personality/phobia disorder, and treatments based on it being one of those types of disorders do not help, and may actually make your overall situation worse. Especially any form of GET, and directed CBT (as opposed to supportive CBT, and I am not even convinced of that).
5.
We cannot offer any reliable prognosis, perhaps other than the common sense proposition that early diagnosis, and hence the opportunity to start promptly accommodating and adapting to the disease as much as is possible, probably helps reduce the overall direct and indirect impact/damage/cost.
6.
Beyond supplying the basic diagnosis and characteristics, and a conceptual explanation of PEM and its relationship to exercise/activity, we can only offer some generic and often limited help with stuff like pain and sleep management, some emotional support (though, again, I remain sceptical about that), and accessing social care programs (e.g income support, suitable housing, various living aids like wheelchairs, etc, as required), and medico-legal support (including supplying individual patient advocates, where needed).
You know, the sort of stuff offered to most diseases, and which carries no underlying assumptions about causality or treatment/cure. This is all about reducing the practical difficulties in having the disease, where possible, not addressing the reasons patients have it, nor how to treat/cure it.
7.
Having ME does not protect you from other diseases. The symptoms of ME often overlap with, or can otherwise mask, the early symptoms of unrelated serious and possibly fatal diseases, which can delay their diagnosis and treatment, and produce a worse outcome for them.
(This is one area that that clinicians could (indirectly) help with, via regular (appropriate) reviews. Though even here there are going to be difficulties due on large part to the poor evidence base and lack of specificity. But it is a critical component in developing good management programs.)
8.
Beyond that, it is largely up to you, the patient, to learn about living with the disease through experience and practice, including talking to other patients about it all (e.g. practical advice on living with it, dealing with social services and medico-legal, and emotional support). Reputable patient support groups can be be very helpful with much of this.
*I think there is an important distinction to be made at the clinical level between patients who are 1) both newly sick and newly diagnosed, 2) have already been sick for some time, perhaps even decades, before been newly diagnosed, 3) have been both sick and diagnosed for some time. The three groups probably need somewhat different approaches, especially the first group from the last two groups. There is not a lot clinicians can teach long termers about living with it, especially the already diagnosed.
