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why not bring dr kaufman and chaudhuri in contact ? so that they figure out for us what went wrong. would seem a more plausible and enlightening process to me.

what, if a patient gets so objectively and measurably better ? and obviously was misdiagnosed. should they get their fees back and compensation on top ? does even the mecfs community give them once more "green lights" for whatever havoc and misery they cause ?

if it was a misdiagnose, how can the patient be blamed for that ? though, nobody is questioning those high fly doctors or the system or the mecfs disease in general. this all should raise more questions than calls for research.

from the sharpe-text illness = patients subjective experience disease = pathology found "illness without disease" because pwmecfs feel rejected by medical-institutions, they then reject the med-institutions (suggesting cbt/get) ? after all, cbt/get is for a number of diseases. nothing specific.

excerpt from matties interview. would have thought, that especially tinnitus should have resolved ?

main thing, that they are not plain dumb lying at us and hide important details.

what are the odds that someone THAT exceptionally talented falls ill from a debilitating mystery disease after taking up studies ?

then there was this tethered cord, in 2 out of 3 patients (so far, faik) it seems a consequence of the surgery, rather than a previous overlooked thing. what were the symptoms that lead to the discovery of the tethered cord ? when did they start ?

SS31 = elamipretide which naviaux seems to suggests MitoQ = supplement similar to coQ10 SkQ1 = cardiolipin peroxidation inhibitor, 95% pwmecfs have auto-antibodies Sulfarlem = 60 pills 1.31 Euro, France and Switzerland

it sounds plausible to me, that spine issues cause dysfunction autonomic (...++) and that there may be a collagen problem, i can relate to @Hip but why would this collagen/MMP/virus issue first of all affect the spine, in particular the upper part ? not or so much less other parts of the body...

big stuff, @Jonathan Edwards so it works for mecfs, too... ?

the need to repeatedly ask for basic information is odd. basics should be provided without interested patients asking every piss. as previous patients they should know that and what is of interest. more weird, that those questions are evaded. if you read the related threads you will find, that...

i would say: YES which ones do you consider proven ? things for parkinson, diabetes or depression ? its trial and error, patients get harmed and not helped very often. the placebo-effect is one of the major successes in medicine - i could imagine.

this may be true for all medical treatments. this spine thing is just very "dramatic". what about thyroid treatments ? how many ppl get useless or harmful meds for it, how many get more intrusive treatments (surgeries) recommended ? is this well thought-thru by the practioner ? is there...

spine issues may be a most common finding within the population - i strongly guess. i understand @Jonathan Edwards suggesting in the jenbrea-thread, that the procedure may shortcut some (neuro?) circuits. so, spine issues dont have to be the CAUSE but surgery may provide relief. need to know...

would patients with such a background like jen (with thyroid disease) and jeff (with eds/virus ?) have ever been permitted to a MECFS stanford study (or ron davies) or fluge/mella ... ?`

female patient 1, who went severe mecfs/pots by 12 (i understand), sounds close to things reported "here" (my formatting)

i thought, mecfs-DIAGNOSE requires normal thyroid values. otherwise it would be considered a thyroid-disease. does anyone have a link to the movie unrest, to watch it for free. cant afford netflix luxuries.

could such a much promoted public claim inflict damage on the mecfs-community ? "mecfs patients walk away with frankenstein-stitches and feel healed" ? i think they should really answer the (for some reason hard) questions by their fellow patients and bring the supporting evidence (lab tests)...

they made it the mecfs-communities business. they went maximum public with their recovery-treatment. asking questions is not about making anyone "accountable". people sick with the same thing may want to understand what could have happened, and what of it may apply to them. going fully public...