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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. garcia

    OM-85 - Broncho-Vaxom to raise Percentage Natural Killer T Cells

    Any update on this? Did you try it? Many thanks!
  2. garcia

    BMJ May 29th: ME is 'trivial', not a real affliction and patients are 'weak-willed'.

    Agree with Silencio. There is a lot to criticize in this article, but not the stuff that you quoted IMHO. I would posit that GET at least is anything but benign. This is the nub of the issue for people like Sharpe who ignore decades worth of biomedical findings. Again this ignores the fact...
  3. garcia

    Colostrum Maf

    That paper can be found here: Oral Colostrum Macrophage-activating Factor for Serious Infection and Chronic Fatigue Syndrome: Three Case Reports Sadly from the above paper I linked to, this doesn't seem to be a property of colostrum MAF in particular, but the authors are claiming it to be a...
  4. garcia

    Medical gaslighting finally is being recognized by the mainstream press

    Gaslighting like many such issues only occurs when there is a fundamental power imbalance, and gender can definitely be a part of that. 52% of UK gps may be female, but the power structures within the medical profession and society as a whole are largely male, and certainly medicine is extremely...
  5. garcia

    David Tuller: My brief encounter with Prof Crawley

    Probably a stupid question, but can the family not change GPs? It sounds like the current GP is going to be an obstacle. Also could Charles Shepherd not get involved?
  6. garcia

    Terrible Wikipedia article on MECFS! (CBT, etc)

    It's probably best to take a long-term approach with this. Making sure the science is up to date could perhaps be the first priority as it can all (presumably) be referenced so should be (relatively) non-controversial. The treatment stuff is probably going to be the last thing you are able to...
  7. garcia

    A 50,000 Foot Overview of Major ME/CFS Theories

    I think some may be confusing causal theories / mechanisms with triggers. E.g. Dr Myhill deals extensively with Organophasphate poisoning and aerotoxic syndrome. IMHO those aren't causal theories but triggers (for e.g. mitochondrial dysfunction). Also I don't think Dr Kerr ever proposed that...
  8. garcia

    LED red intranasal light therapy

    Good point! I suspect the profit motive is strongly at play here sadly. BTW which MED-X unit do you use Chris?
  9. garcia

    Pyruvate Dehydrogenase Deficiencies and Cures?

    Ethyl pyruvate has been on my radar since last year. Someone on reddit (presumably healthy) posted that they took a supplement which had Ethyl pyruvate as the main ingredient and got amazing cognitive improvements from it. Sadly that supplement is no longer available, and the only other sources...
  10. garcia

    ME on BBC news this morning

    I actually started downloading the video but stopped for a few reasons: 1. The interview was so short that it was bordering on taking the piss 2. You generally can't put bbc stuff up on youtube - they have algorithms to recognize their copyright. Sometimes it works, but most of the time it...
  11. garcia

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    The truth about Trevor Marshall is finally revealed:
  12. garcia

    Good article on Jen's film Unrest in The Telegraph today 24th Oct

    I highly recommend you read Guardians of Power: The Myth of the Liberal Media by Edwards and Cromwell.
  13. garcia

    Good article on Jen's film Unrest in The Telegraph today 24th Oct

    "Brea, meanwhile, puts her improvement (to the point of being able to travel and finish the film) down to two antivirals and a drug used to treat related autoimmune diseases, prescribed off-label by doctors in the US" One of the antivirals is Valcyte. The drug used to treat autoimmune diseases...
  14. garcia

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    He was doing that classic doctor (/ male in a position of power) thing of not actually listening but just umming when she was speaking. It felt like an NHS doctors consultation at times (except about 4 times as long!). I also felt it was really bad form not to have watched the film in its...
  15. garcia

    Lactobacillus Fermentum: a probiotic that creates/recycles glutathione, improves heart health

    Any updates on how you or your husband are getting on with L. Fermentum @Basilico ? Many thanks!
  16. garcia

    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    I thought readers of this thread might be interested in the following article. Mindfulness and Meditation are increasingly being hyped as cure-alls by the media. What people may not know is that far from being harmless, they can have unexpected and nasty side-effects, for some even resulting in...
  17. garcia

    How I recovered.

    Peptides are an exciting area of research / treatment, and these peptide shots may indeed help some people, but I want to clarify a couple of things about "Oxford Peptides". Let me precis this by saying I am no fan of Stephen Barret or quackwatch, but even a stopped clock is right twice a day...
  18. garcia

    "Lisa Steen: The wilderness of the medically unexplained" - GP with cancer misdiagnosed as psych.

    I love the way they turn the story into how tragic the situation is for doctors, rather than how tragic the situation is for patients! The fact she was a doctor seems to have blinded her to the fact that patients are treated this badly (and die as a result) all the time. It's normal for us. Only...
  19. garcia

    Vagus Nerve Stimulation (t-VNS) using TENS (non-invasive)

    The Ceromed NEMOS is a medically approved commercially available in-ear Vagus nerve stimulator: http://www.cerbomed.com/ It is not cheap though (£2500 from here: https://www.nemos.uk.com/, though you can do a 6 month trial for £400). Using a tens machine sounds like a much more affordable...
  20. garcia

    Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

    Testosterone gel is pretty much the only thing which will calm down my overactive NMDA receptors enough for me to be able to go out. I think the dopamine hit is possibly the primary mechanism. The Gel is actually far superior to other forms, as you get DHT conversion with the gel (the majority...
  21. garcia

    Case definition for Progressive ME

    This x 1000
  22. garcia

    Dr Myhill is now treating Lyme and co.

    It's good that Dr M is offering these tests. My worry however is that since these infections are horrendously difficult to treat, some patients will be left worse-off by following a one-size-fits-all "protocol" (e.g. metronizadole left me in a permanently worsened state to which my baseline has...
  23. garcia

    Qu - does altitude help or harm?

    I've flown twice since I got sick and both times I felt pretty darn good afterwards. I was able to do much more than normal. There definitely seems to be some kind of beneficial physiological effect, in me as well. Would love to know the possible mechanisms.
  24. garcia

    UK, London: RECRUITING NOW: SAFFE trial on enhancing slow-wave sleep in CFS using Xyrem

    No, that is not what I'm saying. The NHS does not diagnose ME. What it does do is diagnose chronic fatigue (or what it calls CFS/ME) and lumps everyone into that category. So if you do a study on NHS patients with CFS/ME, and make it so they have to stay in hospital for 5-days 3 times, you are...
  25. garcia

    UK, London: RECRUITING NOW: SAFFE trial on enhancing slow-wave sleep in CFS using Xyrem

    Several nights? Even one night would be severely uncomfortable for many of the reasons Justy has pointed out in an earlier post. I agree it is a catch-22 as far as the study is concerned. I'm not suggesting the study shouldn't go ahead, merely pointing out that the cohort is likely to be highly...
  26. garcia

    UK, London: RECRUITING NOW: SAFFE trial on enhancing slow-wave sleep in CFS using Xyrem

    I was recommended for this study by my specialist (after many years of waiting to be put forward for some kind of trial). However looking at the fine print, you have to spend about 3 weeks in hospital (5 days at a time). No one who has any level of serious impairment / disability (i.e. ME) would...
  27. garcia

    Book published this week in UK referring to ME as psychosomatic

    This times 10,000. I've heard of MS patients recovering and showing their neurologists their MRI scans (proving recovery) only for the neurologist to tear them up in front of their face.
  28. garcia

    Something that's helping me.....

    @twilight7 Hi Gemma, very interesting feedback on Nalcrom! Which form of Nalcrom did you use? I notice that there are 100mg capsules available. Its also available as nasal spray, inhaler & eye drops. If you were on the capsules what dosage were / are you taking? Many thanks!
  29. garcia

    Immunotherapy in Cancer comes of age

    http://www.bbc.co.uk/news/health-32951892 From wikipedia: Apparently both drugs (and especially the combination) carry the risk of very severe side effects. But interesting research nevertheless given the current testing of cancer drugs in ME/CFS. Also both drugs cost about £75,000 each...