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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. Effi

    The Real Story About Chronic Fatigue Syndrome (on physical therapy/physiotherapy)

    world-leading authorities in the field of neuroscience and people with chronic fatigue syndrome??? What a load of $$$. They are world-leading proponents of central sensitization (e.g. Canada has them to thank for it), but whenever there's cash to gain in biomed research, they'll happily jump...
  2. Effi

    Anyone tried amending the Wikipedia entry?

    @Kenny Banya You might want to read this thread before you put any energy into trying to change anything: http://forums.phoenixrising.me/index.php?threads/chronic-fatigue-syndrome-wikipedia-can-we-change-this.47998/
  3. Effi

    Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

    Well done @Mary!! Great letter, thanks for putting in all that effort :balloons::trophy::star::thumbsup:
  4. Effi

    Article (not new) is bad news for stress models of disease

    If I want to sell more classes and make a ton of money, then no. :rolleyes:
  5. Effi

    Article (not new) is bad news for stress models of disease

    This was published last month: What Is the Molecular Signature of Mind–Body Interventions? A Systematic Review of Gene Expression Changes Induced by Meditation and Related Practices I haven't read it all, but the list of 'methodological problems' is longer than the review itself... Yet the...
  6. Effi

    General ME-related news from Scandinavia

    This seems to be the new trend in BPS land: adding a pinch of bio. They have also stopped saying it is 'all in the mind', but have repackaged this idea into 'your body is playing tricks on you'. The end result is still exactly the same though.
  7. Effi

    Economic evaluation of multidisciplinary rehabilitation treatment versus CBT for patients with CFS

    I looked up the trial registration number of this study and what came up was the information of a lengthy study project called FatiGo (another great acronym for the list). The funding came from a charity that is run by Delta Lloyd (big insurance company). This was the study protocol...
  8. Effi

    Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation

    I had OI before I even knew I had ME, before I even knew what OI/ME was. I didn't know I had anything, just that I was feeling really awful, all the time. From what I have learned about OI over the years, I now know I already had it months before becoming homebound. I am very unimpressed with...
  9. Effi

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @Jenny TipsforME I believe many cases of post-cancer treatment fatigue are also considered MUS.
  10. Effi

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @Jenny TipsforME definitely Multiple Chemical Sensitivity. I wonder if there's a list somewhere in the work of Per Fink (tried to find but couldn't). One of his papers says that Bodily Distress Syndrome (other term/umbrella term for MUS) "succeeded to capture 10 diagnostic categories of...
  11. Effi

    Endogenous Pain Facilitation Rather Than Inhibition Differs between CFS, MS, and Controls

    I wish this team would stop conflating CFS with chronic pain conditions. Tbh I wish this team would stop working on CFS altogether. Pretty much every single one of their papers I have read so far was written clearly for the sole purpose of making people believe central sensitization is a thing...
  12. Effi

    May/June magic... how does it work?

    @PeterPositive There's quite a lot of PWME saying they feel better in a specific season or a specific climate. There have been some studies about how the immune system changes with the seasons. I wonder if that could be the reason why people with systemic illnesses feel better or worse...
  13. Effi

    Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndr

    Judith Rosmalen is one of the most hardcore BPS people of the Netherlands. She is also a member of the dutch health council that is supposed to make new treatment guidelines for PWME. If anyone hasn't signed the dutch health council petition yet (demanding to change the health council members...
  14. Effi

    The Truth About Healthy Eating

    We were talking about that in a different thread: we start eating healthy cause our health is already going downhill. No amount of healthy food is going to stop that downhill slope I think. Or at least it didn't for me. My diet was squeaky clean. (It still is, because that's what I feel best on...
  15. Effi

    Review paper: 'exercise therapy for chronic fatigue syndrome'

    :vomit: https://www.ncbi.nlm.nih.gov/pubmed/28444695
  16. Effi

    Godts et al: Binocular Vision in Chronic Fatigue Syndrome

    The CFS/ME Medical Centre in Amsterdam has decided to add an eye test to their standard list of tests, based on the info in this paper. Not sure if it is done for research purposes, or for diagnostic purposes. They are trying to distinguish between convergence weakness as a consequence of ME...
  17. Effi

    NETHERLANDS: ARTISTS TO SHOWCASE THEIR WORK TO RAISE AWARENESS FOR ME

    @Helen There is a version in English (change language at the top right of the page): https://petities.nl/petitions/me-is-not-mups-change-dutch-health-council-committee-and-adhere-to-the-advisory-report-assignment?locale=en
  18. Effi

    Please help me find medical explanation for noise sensitivity which will convince my parents

    @Wolfiness I think Jarred Younger talked about this at one point: he developed a method to calculate the temperature of the brain. In PWME he saw that in certain areas of our brain the temperature is higher than normal (you could call this 'brain fever'), and that it's precisely those areas of...
  19. Effi

    Detection of Urine Metabolites in a Rat Model of Chronic Fatigue Syndrome before and after Exercise

    They created a mouse model of overtraining syndrome, not CFS (and not even chronic fatigue).
  20. Effi

    Common & unique associated factors for medically unexplained chronic widespread pain & chronic fatig

    I thought it was explained very well in this article: https://aeon.co/ideas/bad-thoughts-can-t-make-you-sick-that-s-just-magical-thinking
  21. Effi

    The Stanford Paradox: Elevated Energy Production Found in Chronic Fatigue Syndrome (ME/CFS)

    I'm exactly the same: more protein, more veg, less carbs. Sugar/carbs make my symptoms much worse. But one thing I have found out is that AFTER I have overdone things mentally (concentrated too long/too much), a fast-absorption sugar (like pure dextrose tablets) make me feel a bit better. I have...
  22. Effi

    Webinar for GPs in the UK with Dr Julia Newton

    Does POTS mean 'positional tachycardia syndrome' now? That's definitely new! :rolleyes:
  23. Effi

    Common & unique associated factors for medically unexplained chronic widespread pain & chronic fatig

    @Dolphin Do you mean that although this study doesn't talk about ME/CFS (just 'chronic fatigue'), it has on occasion been quoted in issues to do with ME/CFS?
  24. Effi

    5 emotions which turn into Chronic fatigue.

    @Techs You seem to be opposed to the idea that the concept of 'stress' as a trigger of disease leads to patient blaming. We certainly don't blame ourselves, but an important part of the medical community and government does use this concept as a reason to put the entire burden and responsibility...
  25. Effi

    5 emotions which turn into Chronic fatigue.

    I had a very clean diet, exercised, meditated. But I still got sick. Looking back now, I feel like the reason why I got into clean eating, meditating, etc. in the first place was because I was already starting to feel... off. I had no idea what was happening at the time, but knowing what I know...
  26. Effi

    5 emotions which turn into Chronic fatigue.

    I think I understand what you mean. The thing is though, that 'stress' is a very bendable concept. Some researchers say 'stress' when they mean a virus, being exposed to a toxic agent, or some physical trauma like a bad car accident. But the word stress is also a wastebasket word used for 'any...
  27. Effi

    5 emotions which turn into Chronic fatigue.

    I do feel like there is a certain overlap in symptoms between ME and PTSD (e.g. being easily startled by things that wouldn't have had that effect prior to the illness). But it's not because it looks partially similar that it is the same illness, or some sort of similar illness state. I'm sure...
  28. Effi

    5 emotions which turn into Chronic fatigue.

    This is very much my experience. It is easy to say stress is what caused the illness, but in fact it is our being sick that is causing us to be unable to handle a normal (healthy!) amount of stress. Blame the illness, not the patient.