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  1. InitialConditions

    Article BBC: Endometriosis: How new treatment 'changed my life' 2021

    I don't know if this is coincidence, but this thread from this morning is a personal experience of using sodium dichloroacetate for ME. https://s4me.info/threads/my-treatment-with-sodium-dichloroacetate.19505/
  2. InitialConditions

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    The rescheduled BACME 2020 conference will take place on Tuesday May 11 2021. https://www.bacme.info/civicrm/event/info?id=6 I was wondering if anyone had downloaded last year's program from the website (linked in the first post of this thread, but now taken down). I'd be interested to see what...
  3. InitialConditions

    Blog - Hypothesis: ME/CFS as a Breakdown in Homeostasis, 2021, Marks

    This isn't a new 'theory' or 'hypothesis', so I'm not sure why it's being presented as one. There's nothing new being brought to the table. The article is essentially a quick literature review of various strands of in-vogue research topics in ME/CFS. Also, it seems David isn't familiar with the...
  4. InitialConditions

    Hypothesis: COVID-19: A methyl-group assault?, McCaddon and Regland, 2021

    Of course, but it's one of those areas that has been touted as a panacea, it comes up over and over again (despite no strong connection) and it's often shrouded in pseudoscience (in this case the MTHFR gene variant guff). I guess there's a certain allure to the idea that your illness might be...
  5. InitialConditions

    Hypothesis: COVID-19: A methyl-group assault?, McCaddon and Regland, 2021

    If you visit some patient groups and the Other Place, you'll see methylation is still very much in vogue. There's something about it that just draws people in.
  6. InitialConditions

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    For what it's worth, I do agree in that there are a handful of ME patients who are not doing the community any favours. This seems to be an issue especially on Twitter. At times I have fallen into this trap, though I have never been abusive. We must tread a fine line. Be clever. They are waiting...
  7. InitialConditions

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Michael Sharpe has liked Paul's recent tweet (see above). I noticed from Paul's twitter profile that he's been retweeting six-month-old Henrik Vogt (Norwegian BPSer and Recovery Norge founder) tweets, in case anyone wants to connect the dots here....
  8. InitialConditions

    Persistent SARS-2 infections contribute to long COVID-19, Jacobs, 2021

    This is one of my pet hates. It really needs to stop (even in hypothesis journals).
  9. InitialConditions

    Covid-19 vaccines and vaccinations

    That's true, but that's just current risk. We don't know about the future. My current risk is probably low. I don't really go out that much.
  10. InitialConditions

    Covid-19 vaccines and vaccinations

    I have just been offered the vaccine after requesting to be put in Group 6 (using the ME Association letter). I am a little cautious of getting it with not knowing how it will affect me, but I will almost certainly go ahead and get it.
  11. InitialConditions

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    That's very true. I wish this wasn't the case though, because some of these symtpoms seem to be objective, visual evidence of illness, and some may even be suggestive of what's going on.
  12. InitialConditions

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    With regards to (b) (i) tinnitus - huge problem for me, occasionally noted, but possibly 'underplayed', in the literature (ii) visual processing issues - visual noise, afterimages, issues with patterns and contrast. The pressure of my glasses also gives me problems when I'm crashing. (iii)...
  13. InitialConditions

    ExFACTR Study: Exploring the Feasibility of ACT for Children and young people with CFS/ME ... in prep. for an RCT. Crawley et al. Recruiting Jan 2021

    I missed this thread. I have just seen this study come up elsewhere. Does anyone thing this name is actually quite offensive and not really suitable?
  14. InitialConditions

    What doctors with a specialist interest in ME/CFS do online consultations?

    If I recall correctly, Jay Goldstein basically just threw medication at patients, and devised network trees or algorithms to determine what might work next, or what to add/subtract. He had is own theory of what ME/CFS was and then used medications like you would ingredients in a complex recipe...
  15. InitialConditions

    Migraine headaches in Chronic Fatigue Syndrome (CFS): Comparison of two prospective cross-sectional studies, Baraniuk et al, 2011

    Headaches are one symptom I have not really suffered with since onset. I probably have less headaches than the average person. I do have quite bad vision issues, but not of the type associated with headache/migraine.
  16. InitialConditions

    Covid-19 vaccines and vaccinations

    Moved post I don't think we have that knowledge yet. It requires tonnes of data that isn't available from the trials. Edit: Add article: https://www.the-scientist.com/news-opinion/trials-unlikely-to-show-if-covid-19-vaccine-prevents-severe-cases-68109
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