In response to the medical Royal Colleges joint statement:
Interestingly the first appearance of this statement, on the Royal College of Physicians website, the title referred to ‘medical leaders’ signing the statement, but it was posted without any names attached, at least these anonymous signatories were subsequently revealed in the BMJ (see the latest
S4ME News in brief for all the relevant links).
So they had been doing something they called GET, and had been explicitly using the PACE trail, with a clear definition of what GET is, as evidence in support of that.
However, now they claim they haven’t been doing GET for much of that time. So when did they realise that PACE type GET was no good and stop using it? Why did they then not stop citing the PACE trial as not only supporting their methods, but also justifying extending their methods to other clinical groupings including the dubious diagnoses of FND and MUS, and also now to Long Covid?
When did they realise PACE type GET was ineffective and potentially harmful? Why did they not then start recording harms in the clinics they are involved with, and start warning patients of risks from misapplied exertion? Either way they were doing GET knowing it might harm people, or they were not doing GET but calling it GET and not telling people of this change. Can they be said to have had informed consent for their interventions if people don’t know what they were doing and did not know of the potential risks involved?
If they have this new therapeutic intervention, that is not GET, that they now claim works, at least for some, why have they not been recording long term outcomes, not been recording harms? Most specialist services have been demonstrated not to have any reasonable mechanisms for recording harms, and do not follow up on people who stop attending, who refuse treatment, other than that is the paediatric services who may follow up refusal of treatment with accusations of inducing illness by the parents and institute child protection procedures, and do not undertake any follow up for people discharged after completion of their interventions.
The Surveys of what specialist services did, until this summer reported high levels of use of GET, whereas the survey reported this Summer reports low levels of use of GET. However this was only after serious questions had been more widely raised about the reliability of the original PACE conclusions, after NICE had published their evidence review finding the various GET studies of low or very low quality and after it became obvious NICE would be withdrawing their endorsement of PACE type GET.
If this new ‘not GET’ intervention works, where is the evidence for it? It is claimed that they provide evidence based interventions, but the only research evidence out there relates to PACE type GET which they now say they didn’t do.
Interestingly they reject evidence of harms from GET as valueless because it is anecdotal, even though there are now thousands of anecdotes in the form of fully reported surveys, including most recently one commissioned by NICE [added - error of fact,
it was Forward ME that commissioned this survey] involving people that been having what they believed to be GET within the British NHS. Presumably then many of these people, if GET is no longer done, have been having this new ‘not GET’, and are still reporting harms.
In contrast these eminent physicians and psychiatrists want us to allow them to continue their new ‘not GET’ without any evidence, just their own clinical observations, that is, their own undocumented and unreported anecdotes. How is this acceptable when patient anecdote, systematically recorded through surveys and openly published is not?
This is the medical Royal Colleges ‘great and good’ demanding to be allowed to treat on the basis of their own personal beliefs without any evidence base. I don’t see how this is any different to their predecessors who wanted to continue blood letting through incisions and applying leeches on the basis of their personal clinical experience, also arguing that stopping bleeding would leave their patients/victims without any treatment or hope.
Unless I am very delusional there are major problems in the Royal Colleges’ logic, and what they are advocating is certainly not Science, not even medical science.
It has been argued to that their preferred interventions help in conditions, that co occur with ME, so to lose GET for ME means these comorbities must go untreated.
In the ‘many comorbid conditions’ that ‘GET’, whatever that may mean when used by these ‘great and the good’, has supposedly been shown to help, either by citing the original PACE trial as justification or using studies of identical design to PACE, ie studies of low or very low quality. So I would question whether they have any meaningful evidence base for using it for those conditions either?
However over looking that, because a treatment works in one condition, that is no justification for using it in a co occurring condition where it has been demonstrated to be harmful. The logic of this would justify the continued use of thalidomide in women who previously may have benefited from it, when they become pregnant.
There is in extraordinary circumstances justification for using a treatment known to involve harm, where it is demonstrable that the benefits outweigh the harm. However this is only acceptable where the patient knows the risks and is able to make an informed choice based on quantified risk.
