It would be a good start to collect high-quality papers that show a biological genesis in ME.
Well, for a start we can probably take a look at
this document our wonderful JaimeS put together.
I don't know this. Do you have a link?
From the
roadmap document Hip put together: 'ARUP Lab in Utah, USA offers such microneutralization antibody tests for
coxsackievirus B and
echovirus which cost around $440 each.' As far as I know, these viruses currently are the most likely to be causal for ME (or at least what was formerly called atypical polio and then renamed ME), or at least have the strongest implication of being linked to the illness. High EBV titres and others are less likely to be seen as relevant unless another type of evidence, e.g. immune dysfunction towards the specific virus in question, is provided as well.
Why is SPECT not looked upon as unreliable?
I had made a PET scan. There it was seen that I have undersupplied and 'oversupplied' regions. Undersupplied was e.g. the hippocampus, and the radiologist said that explains impairment of memory; the oversupplied region means something like 'inflammation'. I also had (have) low function of the thymus.
German doctors ignored that scan because, obviously, they didn't know what to do of it.
The radiologist is said to be one of the better ones. He's old and I don't know how long he will work (or live). It's possible, I guess, to get a report. Would that be helpful, do you think?
From what a friend of mine told me, SPECT is not seen as reliable evidence for dysfunction because it is not known how your SPECT had looked before you acquired said dysfunction. A similar argument could probably be made against the PET scan you mentioned, where without a clear pathology it is not known how meaningful the under&oversupply of the regions in question actually is. I don't know anything about this stuff though. I cannot estimate if the radiologist's report would be useful because I don't know how easily it would be discarded, but then again, if it is not too much trouble to acquire it probably won't hurt...?
Do you mean in general?
How about PACE trial which proved CBT and GET don't work (after clearing the authors' attemps of making the data nicer)?
Don't the CPET results show that exercise is contradicted in ME?
There is also the paper where Gulf War Illness and ME (and controls) were compared with each other after CPET.
On a personal basis, I have my own story; let's see what will happen in court.
I meant pretty much in general, yeah. Like what exactly are the best papers (and so on) to cite. In an ideal world, the
Snell et al paper in combination with the actual findings of PACE would possibly be enough, but I doubt it will be that easy in practice if it does not come from a perceived source of authority.
I cannot say how the VdK is in general. Obviously they helped several people. In those cases I needed help I got nothing. And there were deadlines about which they gave a damn.
In which respect could VdK help our case? Are you a member?
Well, from what I've heard the VdK is pretty hit or miss because how much they help you depends on which person your case is assigned to and how motivated, knowledgeable and overworked they may be. I am not a member, no, but I had an appointment at one of their offices a while back for a free advice session and the guy there mentioned they occasionally do these 'Musterklagen', sometimes in cooperation with the SoVD if I understood him correctly, where they try to tackle a bigger issue via a specific case. If we can get the very top level of those institutions to understand that we are dealing with what I would describe as a benign case of attempted Völkermord, I figure there is a chance they might be interested. But only if we actually have a case, and we are probably a bit early without a validated biomarker and everything.
Hm, §278 says "wider besseres Wissen " ( against better knowledge) which includes, in a way, intent, doesn't it? You would have to show a) that the 'expert' had the knowledge, b) that the expert acted against it (probably in order to achieve a certain goal). Hm...
To show a) can be very hard, especially in case of ME. (There is no knowledge about ME.)
I wonder if there's a section about 'non-experts' giving 'expert testimonials', i.e. doctors who don't know ME at all (which can be shown via CV and publications) and who write reports about it. Or if §278 includes this case in a way. Or maybe §277? That happens regularly with the MdK and the 'experts' of the pension fund (DRV) or even with medical officers.
I guess we need a lawyer here who knows his/her stuff... In normal-people-theory, it should not be possible to be an expert witness for anything unless you know what you are doing, so by definition going against the scientific standard would also have to constitute going against better knowledge. But in legal-territory-reality, this may not mean anything at all. It is always hard to prove intent without basically an whistleblower handing over internal emails of the people in question slurring their victims, but the financial motivation against claimants and for their employer at least should usually be bloody obvious. But then again, bloody obvious to normal people is not the same as readily apparent to a judge who believes e.g. the MdK is objective on or qualified for anything. It may be easier to get 'minor' wins where testimonials get discarded because the expert witness cannot prove he had the necessary qualifications to give an expert opinion in the first place though.
As far as I know, the Charité and Fatigatio have historically been the only places for accredited courses in continuing education and I highly doubt anyone doing paperwork on ME cases has ever even heard of those, so questioning their competence is probably at least possible.
Would you explain again?
