• Welcome to Phoenix Rising!

    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. Research 1st

    Prusty talks about his upcoming research on a podcast

    Everything is fitting into place nicely by various biomedical researchers that ME/CFS can be an outcome of SARS-COV-2, which makes perfect sense as ME is a post viral illness. NB: It's the CDC who took out viral association with Fukuda/CDC criteria CFS alongisde PEM - both hallmarks of ME. ME...
  2. Research 1st

    Prusty talks about his upcoming research on a podcast

    The Scientific findings are in the paper Bhupesh Prusty and his co-authors produced and which he constanty evolves as more knowedge/data appears month by month - as is the nature of science. Professor Carmen Scheibenbogen, a co-author, is very experienced and knowledeable in immunology and...
  3. Research 1st

    Prusty talks about his upcoming research on a podcast

    The following quotes from the aforementioned podcast may explain people's confusion over the timeline and my own. 00:02:31 Emily Kate Stephens: "You've added new results into your paper". 00:03:03 Bhupesh Prusty: "This week we're going to submit the paper". 01:11:37 Bhupesh Prusty: :Today or...
  4. Research 1st

    Prusty talks about his upcoming research on a podcast

    @Countrygirl. A small correction if I may of your attached PDF posted above. Page 5, paragraph 2, line 3. It should read "double stranded DNA", not DLA. Thanks for the write up, it was excellent.
  5. Research 1st

    The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    For people interested I found the following video with Dr Asad Khan (MD) who has had the 'Venous Oxygen Saturation' test performed and which he found was markedly low. Video Source: YouTube Video Title: Is (Micro) Clotting Causing Long Covid? | The role of H.E.L.P Apheresis. NB: The...
  6. Research 1st

    Second study might confirm neuroinflammation in ME subcortical brain

    I read that negative paper a while ago and unfortunately it's the age-old phenomena of a heterogeneous group of Chronic Fatigue patients producing a negative association to a previous positive association - a well known problem that has plagued CFS research since the 1990's due to our current...
  7. Research 1st

    Dr Byron Hyde, a doctor who has championed ME patients for decades, has license removed

    One way to give the medical mafia two fingers up is to buy Dr Hyde's affordable little book on diagnostic tests. This way you can imbibe some of his knowledge, which is decades of helping ME CFS patients challenge misdiagnosis and possibly obtain new (and more appropriate) organic disability...
  8. Research 1st

    Research Re Exosomes and ME/CSF

    Regarding the potential for exosomes in post infectious CFS pathology, please have a look at the following. My edit in bold text. Thank you. "Similar to other pathogens, retroviruses hijack exosomal proteins as well as other components to increase their spread throughout the body. In addition...
  9. Research 1st

    Fungal nail infection

    Hi. You're sensible to be cautious as this drug has notorious C.N.S side effects. I would try something more gentle first, a DIY topical remedy. It may have a zero to moderate effect , but is much more safe. 1) Consider painting vinegar on with a little paintbrush. See if the skin reacts as it...
  10. Research 1st

    Severe post Lyme ME/CFS patient achieves full remission after Taymount FMT

    Guys, folk making bold claims of KDM and mass misdiagnosis of his patients won't have much of an effect on his popularity to the global PWME community who will always find KDM's insight helpful in regaining some physical function back, with a subset finding him very useful or the exact oppposite...
  11. Research 1st

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    So to recap. An anonymous source tells someone they recovered from a disease with a compound called C60 without any evidence they exist, they were ever ill, and pertaining to an illness that lacks a diagnostic test to confirm it exists in the patient to begin with. This is rather like me...
  12. Research 1st

    OMF-funded RBC Deformability Paper Published!

    Hi Janet, Happy New Year and to all reading this. Let's hope we make some further ground this year. I had Les Simpson's RBC test many years ago, maybe around 20. Back then we pricked our finger and put the blood between a glass slide which had a chemical we added to immediately use to fix it...
  13. Research 1st

    Special Message for you from Ron Davis (video)

    So far the Jarred Younger finding presented at the OMF conference is the most repeatable and robust finding associated to ME because it's not a far out all encompassing idea (metabolic trap) but part of a puzzle similar to other established disease like dementia. It also allows a get out clause...
  14. Research 1st

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    Sadly this is a hopeless paper by the Wessely School (Organic ME CFS deniers) on Chronic Fatigue. KCL PACE trial cohorts are F48.0 psych patients for heaven's sake. Even if it was CDC criteria, that is still useless. Their focus is fatigue in functional somatizers who respond to CBT/GET so...
  15. Research 1st

    Jarred Younger does a webinar with more updates

    Excellent write up, thank you. Two small corrections that are worth editing though in my view. NAA is reduced or absent in brain damage not high. Myo-Inositol is raised as a glial inflammatory marker, so in ME it should be raised not normal. One thing worth remembering, is because CFS is...
  16. Research 1st

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Easy my friend, it's called living in the Marxist UK not an awesome country like Austria. This is how.: 1. ME CFS is researched as psych in UK. British Oxford criteria F48.0 CFS is psych as psychiatrists in denial of G93.3 organic ME CFS created it. So, the treatment is psych because treatment...
  17. Research 1st

    Anyone heard of functional neurological disorder?

    A subgroup of POTS can be a' functional disorder' but only in mental health patients who are bedridden for months at a time with conditions like borderline anorexia who, post gentle exercise over time (via CBT/GET) have no organic dysautonomia and recover. NB: These patients commonly have no...
  18. Research 1st

    Neurology refuses referrals for CFS patients

    What country are you in? If UK or Europe this discrimination is unfortunately common place in neurology as socialised medical health care systems have a monopoly on treatment. With no competition, they can't get exposed, especially if the medico political consensus (via psychiatry researching...
  19. Research 1st

    Improving CFS brain Lactate research?

    Hello everyone, well following American 'pain & fatigue' researcher Jarred Younger's most interesting presentation on CFS brain inflammation which the OMF kindly uploaded to youtube, I wanted to ask you your views on this idea I had as patients please, because my opinion is obviously biased. I'd...
  20. Research 1st

    Glial Activation and Expression of the Serotonin Transporter in Chronic Fatigue Syndrome.

    Interesting paper, thanks for sharing. If our BBB is impaired, then our brains run the risk of being slammed by events people without our condition can shrug off. E.g. We can end up trashed by a virus that others brush off and return to work. Yet we can report huge increase in brainfog...
  21. Research 1st

    German Lab for metabolism test?

    There's no such thing as a metabolism test. What markers do you want to measure? If It's general (not CFS) metabolism, maybe you mean a metabalon test the USA company do? If so, no one else does it, they patented it. Or if you mean the CFS metabolism test discussed by Ron Davis he used on his...
  22. Research 1st

    Help me understand my labs

    Your high IgE is fine, it's only a bit raised. Mine is 10x higher than yours and other than documenting it, doctors ignore mine too and put it down to hayfever and asthma then walk off. They do this as IgE is non specific. Unless you're crippled by allergy symptoms, at that level I'd ignore it...
  23. Research 1st

    Progressive Symptoms Very Concerned

    Thigs I would consider: 1) Cardiolipin raised in organic ME, CFS is quite common on here, but not related to CDC criteria CFS diagnosis, only at a research level. BUT, generally, these are low level positive cardiolipin antibody results CFS patients discover (post diagnosis), not high enough...
  24. Research 1st

    Metabolic Trap, wouldn't we suffer from serotonin abnormality?

    Anyone of you lovely people thought of being a pioneer and getting a SERT PET brain scan? Yes I know it's hard to obtain. :( So for now let's pretend we had this opportunity and we all got tested... Do you guys think it would show we have: low, normal or elevated serotonin? I'd love to know...
  25. Research 1st

    ALS Fears

    Hello. In my opinion as a patient, to allay fears of a fatal neurodegenerative disease like ALS you might want to consider seeing a neurological specialist by ambulance if funds allow (what I resort to) or, to get someone to contact them on your behalf and explain your very real concerns. If...
  26. Research 1st

    Results of the German Cell Trend laboratory for POTS

    Hello. I am glad you have positive results, hopefully in time you can try immunotherapy, although I imagine you'd need more evidence than a single blood test, probably other tests too before having IVGG therapy for POTS? I'd get extra blood tests like IgG subclasses (IgG1, IgG3, IgG3, IgG4)...
  27. Research 1st

    A message from Ron Davis

    As Ron alluded to in his Stanford OMF talk it won't surprise any of us to see a link between ME, POTS, Lyme, EDS, MS, MCAS, Autism etc as they may share a critical common component. Think what the psyche lobby will do if MS is ME + factor Y, and Chronic Lyme is ME + factor Z etc. A great day...
  28. Research 1st

    Metabolic Trap, wouldn't we suffer from serotonin abnormality?

    In light of the OMF scientists proposing that CFS serotonin receptors could be negatively affected in order to cope with high serotonin levels (due to the tryptophan/kyneurenine issue), this interested me as years ago ME doctor/researcher from Belgium, Kenny De Meirleir, mentioned that he...
  29. Research 1st

    A Metabolic Trap for ME/CFS?

    Thought this paper abstract below regarding Serotonin/Kynurenine was interesting as people were wondering what might happen, at least to CFS subsets, with knackered serotonin receptors who end up depressed and it's relation to inflammation and yet the claim of conversely high serotonin? Notice...
  30. Research 1st

    A Metabolic Trap for ME/CFS?

    Think again my friend. Red tape? In the givsrnments eyes, there is no tape and no finish line. What do you think the useless time wasters have been doing to us with the B.S about mind-body for the last 30+ years? The positive news? There are on going privately funded projects that will take 5...