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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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Search results

  1. DanME

    Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

    Hi @Freddy, I don't want to be downer, but have you explicitly asked the Berlin team, if you could share any detailed information about the ongoing study publicly, before they publish anything themselves? Maybe we should discuss this a little low-key. We don't want to jeopardize the study.
  2. DanME

    German musician dies from CFS

    Sad story. But as @TiredSam already has said, it's not at all clear, that he even had ME/CFS. I have read in serveral German newspapers today, that he suffered from myocarditis, accompanied by severe exhaustion and ultimatly died of a stroke. Strokes are not uncommon among patients with...
  3. DanME

    Why so little ME/CFS research from France and Germany?

    I occasionally work for a German ME advocacy group, so I am able to answer some of your questions. There are mainly two reasons for the weak scientific output in Germany. 1) We have only one research group, which conducts serious biomedical research on ME/CFS. The group around Prof...
  4. DanME

    Psychiatrists -- People with authority and PACE.

    I simply don't get this. Nobody attacked her personally, nobody did say, that psychology is a dangerous ideology. Or have I missed something? We just pointed out, that therapists can find themselves in position of critical authority and psychotherapy can have serious side effects. We also had...
  5. DanME

    Psychiatrists -- People with authority and PACE.

    Sorry, but this is a view, I (and other therapists) cannot share. Psychotherapy is never completely harmless. Like every medical intervention it can have serious adverse effects. CBT is not excluded. Especially because the therapist has a greater knowledge base, the patient is often in a...
  6. DanME

    Psychiatrists -- People with authority and PACE.

    Sorry, but I have to say something to this. CBT is not just offering a different explanation for your symptoms. CBT goes much further. CBT tries to change your maladaptive thinking, which usually leads to maladaptive behaviour. Or in other words, the therapist teaches you how to recondition your...
  7. DanME

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    What is the reason for this? It seems, that the German medical establishment is much more fragmented. Of course we have certain groups, which stick together, but not on this massive scale.
  8. DanME

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    I believe not. The UKs medical establishment seems to be very well connected. A lot of researchers probably protect each other and have shared interests at stake. It's just speculation, but I guess it's much easier for American scientist to break the circle. I think it's pretty sad for science...
  9. DanME

    Psychosomatic medicine and ME/CFS.

    Little anectode: I used to work at a psychosomatic hospital, where the doctors mostly treated depression and anorexia. As a curious and naive medical student, I explicitly asked, what is psychosomatic about those diseases, but they didn't came up with a sufficent answer. They just stated...
  10. DanME

    Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

    Good point, Alex. I am a moniist too and everybody should be, unless you believe that the mind is somehow physically uncoupled from brain, which would be a magical or spiritual process. Of course the brain heavily auto regulates itself, but so do the heart and the kidneys. The central nervous...
  11. DanME

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    Cannot believe, this is happing. Finally, their vexatious behaviour is exposed to the academic world. I think the PACE team has made a big mistake by accusing a respected scientist of improper motives or by arguing that criticising studies is unacceptable behaviour, which could stress...
  12. DanME

    Ben Goldacre: checking if clinical trials reported what they said they would

    What? What have I missed? I have been a huge fan of Ben Goldacre so far and enjoyed his superb book and TED talk about Bad Pharma. But his refusal to look into the PACE trial while tweeting about Chronic Fatigue (Syndrome?) extremists makes him and his cause appear in very bad light. The PACE...
  13. DanME

    QMUL (PD White's base) claim simple request for 6-minute walk results in £5m PACE Trial "vexatious"

    "For your information this is £450, calculated as the estimated cost of one person spending 18 hours in determining whether the information is held, then locating, retrieving and extracting the information." Seriously? A person need more than 18 hours to get the raw data from a six minutes...
  14. DanME

    QMUL (PD White's base) claim simple request for 6-minute walk results in £5m PACE Trial "vexatious"

    These people!! Is the university not ashamed of this behavior? Calling anyone vexatious (a new English word I 've learned), who disagrees or is interested in the data, declining discussions without giving any reasons, giving up all diplomacy, showing outright disgust for patient's rights and...
  15. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Thx for clarification, Prof Edwards! While I am also disappointed about the budget, I think the approval is nevertheless an immensely important step for the ME community and research in general. Don't forget that nearly 400 groups applied for COST this year and only 40 got funding. Networking...
  16. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    I ve just realisied, that the proposal has 23 countries listed as proposers: Network of Proposers (23): AT, BE, BG, CY, CZ, DE, DK, EE, ES, FI, FR, HU, IE, IL, IT, LU, NL, PL,RS, SE, SI, TR, UK (ITC: 43%) omg!
  17. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Has anybody heard about the researchers from Latvia and Bulguria? Do we know anything about them?
  18. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Yeah, the Action has been def approved, here: "COST Actions are networks centred around nationally funded research projects in fields that are of interest to at least five COST countries. The financial support averages EUR 130 000 per year for a four-year period." Seems like funding is on...
  19. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    The PDF is copy protected...:O
  20. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Yeah, I think 32 million € is the budget estimate for the next four years. After that they have to apply again. (But also not sure) Quite impressive actually. I hope this propels research onto a new level in Europe.
  21. DanME

    EUROMENE - New European research network for ME/CFS funded by COST/EU

    Hi folks, good news! A new European research network for ME/CFS called EUROMENE has been approved by the European Cooperation In Science And Technology (COST), in layman terms, COST is going to fund professional collaboration between different research teams throughout Europe. "The main aim...
  22. DanME

    Forgotten Plague Almost Ready To Sell DVD's

    I don't want to be too critical, but using a professional streaming service like Vimeo would be much more suitable for the ME community than selling DVDs. In that case, we could at least point interested relatives, friends, journalists, scientists and doctors to the streaming service. I also...
  23. DanME

    CellTrend test for ME/CFS (Prof. Dr. Carmen Scheibenbogen, University Hospital Charite Berlin, etc.)

    I have to chime in. I know Prof Scheibenbogen personally from my advocacy work. She is a very competent and critical researcher and has been fighting for our cause for the last eight years. All against the constant pressure from the (German) psych lobby. She is a good one, trust me! As far as I...
  24. DanME

    #MEaction summary of David Tuller's piece on the FINE Trial

    Interesting and obnoxious. I have never heard about the FINE trial. Another 1,3 Million £ wasted and used for a trial, which was based on a very shaky and absurd hypothesis (the whole "it's in your mind", "you decondition, because of your false believe in a severe illness"). The worst is, that...
  25. DanME

    Forgotten Plague Almost Ready To Sell DVD's

    Why not using Video on Demand/VoD? Vimeo is a serious platform and able to handle large traffic. Easy to acces. Vimeo gets 10% of the fees. Done. https://vimeo.com/blog/post/vimeo-on-demand-sell-your-work-your-way
  26. DanME

    Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

    I must say, this is the most disgusting paper, I have ever seen. There was no statistical difference between the groups. End of story. The hypothesis, that CBT and GET work, must be rejected. To say, maybe the other patients did CBT and GET without our knowledge, is the epitome of pseudoscience...
  27. DanME

    What if....

    At least for subset it probably is. RTX, Cyclo and new findings of antibodies are good hints for the autoimmune theory.
  28. DanME

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    M4 seems to be a bit ominous. Only found in the brain, seems to be involved in extrapyramidal motor control via dopamine.
  29. DanME

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    M3 Receptor: "However, with respect to vasculature, activation of M3 on vascular endothelial cells causes increased synthesis of nitric oxide, which diffuses to adjacent vascular smooth muscle cells and causes their relaxation and vasodilation." "The muscarinic M3 receptor regulates insulin...
  30. DanME

    Miracle cures. Diets. Supplements. Cleanse. Detox. Evidence?

    I completly agree with you. From a scientific or critical standpoint it's actually quite simple: We don't know, what causes ME/CFS and we don't know the pathophysiology either. If you want to gain new knowledge, you have to accept the current absence of it. Everything else is pseudoscience and...