Thanks for another excellent letter John. I have just one problem though, and it's a major one: a tactical problem perhaps but you seem to call for the next slice of 1.5m to be spent on resolving the controversy, which effectively means continuing to spend the money on CBT/GET research, no?
There is abundant evidence from the PACE trial itself that CBT/GET's benefits are mediocre at best, that this only applies to a smal subset of patients, and that there are considerable dangers attached even in the subset selected for the trial.
The headlines are outrageous, the abstract itself is consciously misleading (humpty dumpty was in charge of linguistics again), and the methodology is a maze of obfuscation...but even so, our excellent thread analysing the results themselves, and Cort's article, and the analysis we will all do over coming weeks and months, shows the reality clearly. The obfuscation isn't enough to fool all of the people...
We need that 1.5m to at last go on biomedical research, for the first time ever: that would be a massive statement of intent. We need to start researching the disease. We could run more PACE trials from here to doomsday and they'd always be subverted and distorted just as PACE was. We can't afford to give ground and say OK let's do a CBT study again, properly, and disprove it once and for all: instead we need proper research, biomedical research, research that characterises the patient population and investigates their biological abnormalities.
Maybe there's a middle ground, because it's characterisation of the patient population that's so important: we need data about who has been diagnosed with ME/CFS, who hasn't but has the same or similar conditions, how many of us there really are, what categories we come under, and then measurements of biomedical data so we can start to see what we're actually looking at. That approach seems to me more logical than diving in and pursuing specific theories about the disease, because those theories if wrong would deliver nothing, and with a heterogenous population the picture will anyway turn out to be confused. We have to characterise the population before we can ever get clarity over anything: no matter what research is done if it says "this applies to ME/CFS" when that term clearly does not cover a homogeneous group, then the results will be confusing because we'll have no way of correlating the findings with reality.
Maybe I misunderstand you, but if you are calling for the whole of the 1.5m to be spent on resolving the questions over CBT/GET then...how? If by another CBT/GET trial, that doesn't sound like change to me. My call on that pot is: collect some data, define some well-defined cohorts, survey the whole population, and let's get started studying ME and CFS. The trial has proved in its own terms that CBT/GET don't cure, they just have a small chance of delivering an improvement in quality of life, and even that improvement might be illusory.
Nobody, not even the psych lobby, is claiming that CBT/GET cures the disease and the explanatory model it's based on has to be flawed if that's the case. So it's time to start researching the illness, time to start finding out who we really are, what we all have, how many of us there really are, where we are, how long we've all been sick, what treatments work for which people...data, data, data...
We need to be more careful what we ask for, IMO, and what we don't want is any more focus on CBT/GET. That's been done to death. People will continue to see what they want to see, on both sides, but a virus is a virus and if you find something like that, hard facts are harder to ignore: physical biomedical research, and nothing less will be acceptable for that 1.5m pot. How that pot gets allocated will be crucial: if it goes to the psychs yet again than I shudder to think what the consequences of that might be.
One more suggestion of the type of radical thing that might work. I don't know whether you noticed the scandinavian study recently that found evidence of a virus implicated in Alzheimer's? That was an amazing and highly promising finding and an amazing technique. In very rough terms (this is a really crude description OK), they took a board with thousands of antigen-like shapes, ran patients blood over it, and looked to see what the blood stuck to. In this way they were able to find an antibody shape in patients' blood without needing to have found the virus in the first place. The technique has the potential of searching for an arbitrary virus in any patient population: they ended up with an antibody test for Alzheimer's that was then found in 98% of their (small) study population, and so now the hunt is on for the virus that fits that antibody shape...and for confirmation of the antibody results of course.
One could do that for ME/CFS to search for an arbitrary virus. In a well-characterised patient population that includes people with ME and people who are bedbound, of course...
