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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Vassie

    OMF-funded RBC Deformability Paper Published!

    Don’t be disheartened! Like Janet says this is a step forward. Let’s celebrate! And yes, it’s only one step and many more will have to follow, but don’t lose hope that we will get there. Yesterday I was visiting the hematologist and she was as uninterested as possible about my weird blood...
  2. Vassie

    OMF-funded RBC Deformability Paper Published!

    @nandixon It doesn’t have to be specific to our disease to be helpful. The paper states: “Taken together, our data demonstrates that the significant decrease in deformability of RBCs from ME/CFS patients may have origins in oxidative stress, and suggests that altered microvascular perfusion...
  3. Vassie

    OMF-funded RBC Deformability Paper Published!

    Great news! Beautiful research. I’m hopeful this will lead to a much better understanding of our disease.
  4. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    I also think a diagnostic test will break the spell, but until that day the only option I see is to work like Linda Tannenbaum, as you say. She’s doing a brilliant job. But it’s a job that can only be done by a healthy person, in my opinion. I, for instance, will not be able to take on...
  5. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thanks for the links. I don’t see many options for patients to influence the European funding process either. In the US, where things are obviously progressing at a higher speed than here, at least the researchers are there, full of ideas, ready to start. There is a bitter lack of funds of...
  6. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thanks! There’s lot of exciting research taking place at the moment! Euromene has not responded, unfortunately. I will send my email again, but I don’t have high expectations. Have you heard back from the ENVI yet?
  7. Vassie

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Yes, he used interferon in the past. But gamma only in combination with alpha, I think. https://me-pedia.org/wiki/Interferon#Dr_Chia.27s_investigation_of_interferon.C2.A0therapy.C2.A0...
  8. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Hi FMMM1, I sent an email to Euromene yesterday. If I get a response I’ll let you know. You wrote in another thread that you’ve written to the European Union (EU) Committee on the Environment, Public Healthand Food Safety (ENVI). I’m curious what their answer will be!
  9. Vassie

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Yes, thanks for your remark. I’ve also had an eye on IFNγ for a long time. Oddly enough I seem to feel better when inflammation is increased. Too bad it’s so terribly expensive and you need a prescription, otherwise I would’ve already given it a try.
  10. Vassie

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    This is the moment. You are changing the course of history. After so many years of neglect and aversion to this disease, it’s incredibly heart-warming to see that so many outstanding scientists care! I just can’t believe it, it’s like a dream that finally comes to life. You have no idea how...
  11. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thank you! I will let you know how it goes. It may take a while though. I have to take it easy...limited stamina.
  12. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thank you for your replies! I think I’m going to contact EUROMENE first to ask how I can be of help before I take action. I want to make sure I don’t do anything that may have unintended consequences for our cause. (ETA means edited to add, sorry for any confusion!)
  13. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Hi FMMM1 Are you aware of the EUROMENE project? https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1263-z It is supported by Horizon 2020. I think the Commission is going to point to this. Aren’t we reinventing the wheel? Maybe it’s better to contact EUROMENE to...
  14. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thanks for your good explanation. I’m going to think about this further and see if I can come up with a draft. I think we need to keep our email short and to the point, otherwise it will probably be ignored. We could perhaps translate that email and send the MEPs the message in their own...
  15. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Hi FMMM1 I asked a moderator to create a new thread. I understand your approach. And I like your idea to find a patient in every member state to write to their representatives. I think we need a very good letter with concrete ideas for innovative research, with examples of what is being...
  16. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    Thanks FMMM1 I found one question regarding ME/CFS and the Commission’s response to that: Parliamentary questions 18 December 2017 E-006901/2017 Answer given by Mr Moedas on behalf of the Commission The Commission is aware of the study on myalgic encephalomyelitis/chronic fatigue...
  17. Vassie

    Lobbying for funding for ME/CFS research - they're working for you

    @FMMM1 Unfortunately the link doesn’t work. I’d be happy to write, but I’m not sure how to proceed. The information I read about Horizon 2020 was written for scientists. They can ask for funding for their project. The problem is that I, as a patient, don’t know of any specific projects being...
  18. Vassie

    Tireless Work on Chronic Fatigue Syndrome - profile of researcher Betsy Keller

    Great article! Thanks for posting Murph. Sounds like they are doing a fantastic job! I wish things would go faster, but that’s because it’s hard to be patient as a patient. I’m happy to read that Dr. Keller is aiming at finding a biomarker that doesn’t involve an exercise challenge. Dr...
  19. Vassie

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    Dr Phair has a project page here: https://www.researchgate.net/project/Etiology-of-Chronic-Fatigue-Syndrome Here’s his diagram:
  20. Vassie

    My Experience at the Stanford Genome Center and w/ Ron and Janet

    Beautifully written @Jesse2233 !
  21. Vassie

    #OMF ScienceWednesdays-CFSRC+SGTC team member Rahim Esfandyarpour, PhD

    I have a lot of respect for scientists like Rahim Esfandyarpour. Incredibly innovative ideas, taking research to a whole new level.
  22. Vassie

    A Brutally Honest Thread? * Possibly Not for the Faint of Heart

    It’s just around the corner, right? I try to live like that as well, dangling a carrot in front of myself.
  23. Vassie

    The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

    I truly hope when they develop a gold standard diagnostic test it will be something that doesn’t involve an exercise challenge! First of all it’s impossible when you are severely sick. And >no extra torture< is a good idea anyway, no matter what your level of functioning is. It’s ok to suffer...
  24. Vassie

    #OMFScienceWednesdays-ME/CFS CFSRC & SGTC team member: Mohsen Nemat-Gorgani, PhD

    Thank you for posting this @Ben H I’m very glad to read there’s a publication in the pipeline. This research sounds very interesting. I’m also very impressed by the amount of brilliant researchers that have entered the field in the past couple of years. That by itself is a miracle in this...
  25. Vassie

    Multidisciplinary rehabilitation treatment is not effective for ME/CFS: A review of the FatiGo trial

    Thank you Mark for investing your precious energy in this!
  26. Vassie

    The microbiome hypothesis: Lipkin's collaborative, part 1 (Simon McGrath blog)

    I totally agree. And in my experience treating the gut doesn’t solve the problem. It’s not the whole story. I see the gut problems as a consequence rather than the cause.
  27. Vassie

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    I have a lot of respect for you @Manuel for writing this article. What an achievement. I agree the T-cell treatment sounds very promising. Hopefully we will get access to a treatment like this one day, but I’m afraid the cost is a major problem for now. In the meantime, I was wondering if...
  28. Vassie

    The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

    Well done, Hip. It’s very clear and concise like this!
  29. Vassie

    Dr. Ron Davis gets NIH grant!

    Absolutely fantastic news! Like you say @Sundancer : we will see the end to this! We just need to hang on and keep the hope alive. There is more reason to be hopeful than ever! The idea that this maligned disease could lead to a better understanding of autoimmune disease in general...that...
  30. Vassie

    Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

    Haha! No! Let’s not go there. He would get his panties in a knot if he heard that. :nervous: