You are right in a way Sasha, but I think Charles Shepherd is making some important and valid points, and in a suitably measured way. The problem, rather as Esther has pointed out, is that there are no medical treatments that are more adequately tested than CBT. At least that is what I seem to have learnt coming at this from a neutral outside position. I am sceptical of CBT but I see no reason to coerce doctors to use equally untried medical measures.
This is a very interesting topic, I think. I have had ME for nearly 30 years with a very high level of disability. I'm currently almost completely housebound/bedbound and in a good week, can manage an hour of social contact every other day. I'm barely able to look after myself: if I get even slightly worse, I won't be able to live independently. My quality of life is low and I'm now in my fifties. I no longer have much time to lose. I'm now willing to take treatment risks that I wouldn't have considered in my twenties because even if I recovered tomorrow, I may not have many years of good quality life left before diseases of old age start to kick in. Unfortunately, no NHS clinician seems to be willing to join me and allow me to take those risks.
I take your point that at present, we don't have strong, large RCTs showing evidence for medical treatments of ME. However, in the absence of such trials, I think it's an enormous waste of patients' lives not to take a risk, especially with treatments that are low-risk. Would it not make sense for the NHS to trial medical therapies on patients, with full informed consent, not necessarily in RCTs but simply auditing the results that they get (possibly with a waiting-list control group), to inform the choice of therapies suitable for investigation by RCTs?
It seems to me as though the NHS has forgotten that there's a discovery stage before an RCT ever happens. Fluge and Mella had a serendipitous observation, and that led them to an RCT. But because no-one in the NHS will take a risk, they're killing that discovery phase stone dead before it has even started.
My GP constantly tells me that there aren't any RCTs that back up any of my treatment suggestions and I constantly tell him that I will quite literally be an old woman if we wait for them. It seems to me that ME is in the grip of a perverted form of evidence-based medicine: "never act unless there is evidence, even if it means leaving severely disabled patients untreated for 30 years".
I don't know what it is that is standing in the way of the kind of experimentation that I'm suggesting. Patients are on the threshold of being able to pool results of self-experimentation by using data-sharing platforms such as OMI's OpenMedNet. Why isn't the NHS doing this? Is it "first do no harm", or "first don't get sued" or "first don't get sacked"? I really don't get it.
I'm a huge fan of evidence-based medicine, properly and intelligently applied. I think our situation - 250,000 people in the UK, many severely disabled, completely untreated for decades - is perhaps unique in the NHS. In this situation, "do nothing until there's RCT evidence" makes no sense to me. I don't think that's in the spirit of evidence-based medicine as the founders conceived of it. I think our situation calls for some new and creative thinking. I think there's a new paradigm waiting to be born, and a huge opportunity for those who help give birth to it.
Interestingly, I think Dr Bansal at the IiME conference said that the trial evidence for immunoglobulin was at least as strong as for GET/CBT and that he had repeatedly put in applications to his hospital to use it on patients and was repeatedly being refused.
And I am not sure that doctors can be blamed for the lack of service. Min asked 'It's somehow the patients fault the numbers of doctors who treat this physical illness as a physical illness are so incredibly tiny?' The answer probably has to be yes it must be, in a strange way. Mr Jeremy Hunt is in charge of the NHS because patients, or people as a whole, voted his party in to government.
I think that's a bit of a stretch. As voters, we only get to vote in one party or another, even if we disagree with certain policies (even if we know what those policies are going to be once any given party is in power). I don't think we have such fine control over the NHS via voting in elections - we certainly, as voters, can't control who gets appointed minister. No party goes into an election making promises about medical provision for ME. Even if they did, and all 250,000 PWME voted for them, that wouldn't be enough to swing an election.
