This discussion about SPECT scans is very interesting, and it would be really helpful to see more widespread research with SPECT scans.
But my feeling is that Byron Hyde is a local clinician, local to Canada, without a wide scientific, medical or patient following.
If SPECT scans are to be widely used, then there is an immense amount of work that needs to be done with them, and also an immense amount of work using the Nightingale Definition of ME
And until that research is carried out, however successful/specific/accurate SPECT scans are, they are not going to be used as a diagnostic tool by the wider medical profession or the wider scientific research community.
Wide scale studies of SPECT scans would need to be carried out using a broad selection of ME patients (i.e. 'broad' meaning selected from different geographic areas and from different clinicians.)
To truly test the SPECT scan theory, we would need some double blind studies to be carried out using other clinicians' patients. For example, the WPI's cohort, or Dr Bell's patients, as long as they meet the Nightingale Definition of ME.
Sorry, I've not read through the papers yet so I'm not certain if Hyde has done successful double blind trials, but I've never heard Byron Hyde mention carrying out any blind coded trials. If he had, then I'm sure we would have all heard about it (i.e. what percentage of patients he successfully diagnosed using SPECT scans in a double blind trial.)
Until such trials are carried out and published, and replicated by other researchers, the SPECT scans cannot, and will not, be widely used for diagnosing ME.
It's not that I'm against his research. I've got a huge amount of respect for Byron Hyde, and I recognise myself in the Nightingale Definition
, but his work is just not going anywhere fast, in reality.
I first heard Byron Hyde give presentations about 5 years ago, soon after I became ill, but since then, I've never heard any
other researcher talk about Nightingale, Ramsay or SPECT scans.
The direction of travel for change in the CFS-diagnosed communities seems to be more towards the CCC, which seem to have quite a widespread following at the moment.
I support work on ME using ME-specific definitions, but in my opinion we are not going to see a sudden swing to ME-specific research any time soon. I think that the change is going to come from CFS-diagnosed communities (which includes ME patients.)
If the SPECT scans and Nightingale Definition are a very exclusive way to select patients, then I wouldn't mind them being used as a research tools.
But I would like to know what percentage of CFS/ME patients (i.e. CFS + ME patients in the UK, who all get a 'CFS/ME' diagnosis, or CFS + ME patients in the USA who get a 'CFS' diagnosis) meet the 'ME' criteria using the Nightingale Definition and SPECT scans.
If they only select a very small percentage of CFS/ME patients then I think I'd have a problem with it personally, because of the massive political and patients issues that this will cause, as discussed earlier in this thread.
My issue with such specific/exclusive diagnostic criteria is partly because I am of the opinion that ME (as diagnosed by Ramsay/Nightingale) is very widespread in people with a CFS diagnosis. I might be wrong about this, but I would want to see a lot of research before anyone convinced me otherwise. For me, there is the issue of mild ME, which in my opinion has symptoms that can be mistaken for idiopathic CFS. I would want to know how successful Byron Hyde is at separating mild ME patients from idiopathic fatigue patients.
This is a very interesting discussion about whether SPECT scans are useful of not, but I don't think we can get any real answers until full blinded trials have been carried out, and replicated by clinicians in other countries.
It's the same as the XMRV discussion. There's no real answers about XMRV yet, until further studies are published. It's all just opinion at the moment.
So as usual with ME/CFS, unfortunately there's so many questions and not so many answers.
(But I don't mean to be dismissive of the discussion... It's very interesting, and helpful.)
ETA: I've just read Angela's post on the other thread, where she also discusses some of these issues: