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  1. boolybooly

    ME/CFS as a hyper-regulated immune system driven by an interplay between regulatory T cells & chronic human herpesvirus infections (2019) Nacul et al.

    Interesting, this appears to be more specifically about what I have which is comforting to see. Makes me glad I backed the LSHTM biobank. ME specialists from CureME, apparently working on an NIH project. https://me-pedia.org/wiki/CureME My thanks to them all.
  2. boolybooly

    Is ME a metabolic problem or a signalling problem?

    On that last question, yes bicarb definitely makes air hunger worse for me but helps carby burn. Dr Cheney thinks the body has a natural response which causes it to add bicarbonate ions to the blood so they can be used to neutralise cellular acidosis around the body. The liver naturally uses...
  3. boolybooly

    Is ME a metabolic problem or a signalling problem?

    I dont know about these specific studies but it raises an increasingly important and politically relelvant issue regarding the nature of ME as a diagnosis, since these conditions share symptoms yet may also be distinguished at a fairly fundamental level regarding TH1 vs TH2 shift in Lymes / ME...
  4. boolybooly

    Is ME a metabolic problem or a signalling problem?

    I am not sure how this theory matches/meshes with with Dr Cheney's clinical observations. From personal experience I found about a decade ago that even 20 years after onset (33 now) I had problems with feeling like I could never breathe deeply enough to satisfy my sense of needing air. At a...
  5. boolybooly

    Is ME a metabolic problem or a signalling problem?

    FYI in case it is relevant, Dr Paul Cheney theorised that PWME had intracellular acidosis and extracellular alkalosis causing difficulties with desaturation which were measurable. This means there is plenty of oxygen in the blood but it is not leaving the corpuscles and entering the tissues...
  6. boolybooly

    Food tastes too sweet?

    https://www.healthline.com/health/sweet-taste-in-mouth#causes It could be a bug. I remember you made a post about having severe multiple chemical sensitivity which sounds like CFIDS of some kind. Do you have any dietary restrictions like ketogenic diet which mean you are not getting much...
  7. boolybooly

    Comparison of Diagnostic Criteria - discussion thread

    IMHO the biggest problem with all the criteria is they do not consider TH2 shifting. i.e. raised allergic tendency. The problem is most of the conditions mentioned in any of the criteria can also be generated by a TH1 condition like Lyme's which IMHO is a totally different kettle of fish and...
  8. boolybooly

    Is ME a metabolic problem or a signalling problem?

    Interesting question. Strikes me there is no knowing at this juncture. From my own experience and others' reports, people often experience inflammatory reactions of all kinds consistent with TH2 shift at the very least. This involves a plethora of inflammatory issues any one of which could make...
  9. boolybooly

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Missailidis et al. 2019

    Seahorse, summary of inconsistent results in previous studies. http://simmaronresearch.com/2019/08/me-cfs-seahorse-energy-production-study-shows-surprises/ My take on Fisher et al; the results show a significant difference between CCC patients and controls, to EBV challenge, which could be...
  10. boolybooly

    Is ME a metabolic problem or a signalling problem?

    Both is the right answer IMHO since you ask. What you have to bear in mind @Trish is that most disease symptoms are caused by the immune response to the disease pathogen rather than by the pathogen itself. The immune system is a complex web of sensors, signalling systems and effectors. Its the...
  11. boolybooly

    Inflammatory proteins are altered in chronic fatigue syndrome – a systematic review and meta-analysis, 2019, Strawbridge et al

    No, yet ironic that non friends are talking about subgroups, which is where imho we all need to be heading. Call me cynical, but the devil is in the detail and how they or their colleagues try to use it, perhaps to justify a PACE II. Interesting that (from Trish's link) Marshall-Gradisnik et...
  12. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    It would be nice and easy if we could assume Tomas et al are the gold standard by which to judge Myhill et al but as I see it, its not the case because the Myhill et al response said Thomas et al may have the protocol wrong and did not take up the offer to learn it from JMH which is a critical...
  13. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    @richie something changed, lets put it like that, wasn't all good though. I gave up nightshades because they were giving me mouth ulcers. Diagnosed via a food diary and google. I eliminated nightshades reluctantly and the ulcers stopped. Ulcers I thought were probably due to some kind of...
  14. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I think its a credible response from Dr Myhill and Dr McLaren Howard. In my experience as a patient who had these tests, this response is correct in stating... This is correct regarding how it was used in my case, as evidence of low functioning mitochondria to the DWP, while this was the case...
  15. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I think it was good that Tomas et al decided to look at this and I hope they will stay interested and keep asking questions as I am sure they are sincere. It is a shame they could not do the translocator study and as they mentioned, the study was small but assuming the outcome is indicative it...
  16. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    Dont Panic ! ;) Not a problem if diagnosis is made on clinical presentation, which I probably should have said, was the case, especially for my PIP appeal after the test results changed, which was the point of providing alternative evidence. The test did previously help provide evidence when it...
  17. boolybooly

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I dont think Canadian Consensus Criteria are reliable but I have had this test a few times and feel I ought to speak about my experience to provide information for others to consider even if it is just another anecdotal account. The first thing I ought to do is declare my interest which is that...
  18. boolybooly

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    Hi Chris, thanks for corresponding. I was wondering, could linkage be a possible factor in the statistical anomaly? i.e. could this SNP be acting as a marker for a section of chromosome carrying another unidentified gene which is the real factor in predisposing the owner to ME?
  19. boolybooly

    Does anyone else experience soreness in the back?

    I periodically have problems with muscular back pain which does not involve the kidneys but can involve the muscles in the lumbar region, overlaying the kidneys as well as in the thorax and neck. I lived with aboslute agony making my back stiff as a board for over a year until I discovered that...
  20. boolybooly

    Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

    Given this choice of title, I think the question moves the discussion to a political perspective. In theory it should be informed by clinical insights but we dont have many so its hard to be confident of what should or should not be included in ME advocacy at this time. If ME advocacy considers...
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