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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. Persimmon

    BMC Psychology - Review of psych therapies for pain finds evidence is weak. August 2017

    This study was performed by a group with close links to John Ioannidis, and they applied his methodology in their analysis. For those of you unaware, Ioannidis is the person who made the world aware of the "reproducability crisis" - he is a giant in medical research. This paper's Ioannidis...
  2. Persimmon

    Chronic fatigue syndrome and the immune system: Where are we now?

    OFF-TOPIC Hi Murph, Headaches used to be central to descriptions of ME. In the early outbreaks, headache was recorded as a dominant symptom. Typical example - the 1957 BMJ article about the Royal Free outbreak lists headaches as the most common symptom during the early stages of illness; and...
  3. Persimmon

    Chronic fatigue syndrome and the immune system: Where are we now?

    Full text: http://sci-hub.cc/saveme/b77e/10.1016@j.neucli.2017.02.002.pdf This article is a brief summary of the current state of immunological findings in ME/CFS. (It's not a comprehensive literature review.) As such, it is a handy document - much like the summary of research & hypotheses...
  4. Persimmon

    mental performance

    There is a distinct pattern of cognitive impairments caused by ME/CFS. It was first identified when Peterson & Cheney sent some of their Incline Village cluster patients for neuropsychological testing. The pattern was identified by Sheila Bastien PhD and a colleague, back in the 1980s...
  5. Persimmon

    The history of Action for M.E. (AfME) - a question

    Dear @slysaint, That's a colourful read. Thanks for posting. Dear Barn Owl (@Tyto_alba), You are BRILLIANT! That's exactly what I was trying to find. Great big 'thank you'. FWIW, The early days of AfME were a tale of inspired volunteer efforts from an cast of interesting characters. Eg Sue...
  6. Persimmon

    The history of Action for M.E. (AfME) - a question

    AfME's website used to contain a history of the organisation. This took the form of a detailed timeline, going back to Sue Finlay's original newspaper article, and documenting Martin Lev's roles... It was very good. AfME no longer make this document available. It hasn't been on their website...
  7. Persimmon

    Wearable sensors can tell when you are getting sick, study shows

    The senior author of the study being publicised is Prof Michael Snyder, head of genetics at Stanford. Snyder has a big reputation, and is also a member of Ron Davis' ME research advisory board. Using the "wearable sensors" being studied, Snyder realised some of his vital signs were deviating...
  8. Persimmon

    Rituximab (I'm from Holland)

    @Jonathan Edwards, do you know roughly what percentage of Rituxan-treated patients have a crash in antibody levels? Also, over what sort of time period do these patients need regular replacement? Are we talking 1-2 years; 5-10 years; indefinitely? Also, where B cells don't return or there is a...
  9. Persimmon

    UK: funding of ME/CFS by major institutional funders over the past decade

    Might I suggest that Phoenix Rising makes an open request for the release of the ME/CFS grants-dataset created for this Report. My guess is that Holgate commissioned this Report for the sole purpose of lobbying for increased UK Government funding. It's probably a good report for that purpose...
  10. Persimmon

    Viral Reinfection: Can You Catch The Same Persistent Virus Twice — Apparently Yes

    Hip, thanks for yet another interesting thread. Polio infection has a range of impacts. The literature of pre-vaccines outbreaks documented a standard breakdown as follows: - approx 90% of those infected were asymptomatic; - approx 8-9% experienced it much like a cold or mild/moderate flu; -...
  11. Persimmon

    How “Chronic Fatigue Syndrome” Obscures A Serious Illness by David Tuller

    Existing PR thread on this: http://forums.phoenixrising.me/index.php?threads/david-tuller-article-regarding-stigma-of-cfs-hhs-iom-speaks-withburmeister.27858/
  12. Persimmon

    Integrative, Attachment-Based Approach to Management & Treatment of Patients w/ Persistent Symptoms

    The more natural terminology for these authors might have been "neurosis" or "hysteria". By way of explanation, both are modern-day Freudians. Fogany is the Freud Memorial Professor of Psychoanalysis at UCL, and CEO of London's Anna Freud Centre. Luyten is Acting Director of UCL's PhD programme...
  13. Persimmon

    Help me find some facts! :)

    I understand the 25%ME Group was founded in 1995. It predates the Lenny Jason paper that's been cited in this thread by years. The 25%ME Group is a support group for severe ME cases. Their name reflects an understanding that 25% of ME cases become severe. So, this 25% notion appears to have...
  14. Persimmon

    How do you experience colds?

    @jonathanedwards has drawn attention to the apparent phenomena of some ME patients very rarely getting sick with the common cold, while others catch colds far more frequently than is normal. My question is whether people with ME experience colds differently to healthy people. Since contracting...
  15. Persimmon

    New test uses a single drop of blood to reveal entire history of viral infections

    It looks like VirScan doesn't work very well, yet, but that lots of senior medical people (eg Likpin, Racaniello, Science editors) are taking it seriously - presumably because of the potential this technique promises. Also, it's exciting to realise that another high quality, high status...
  16. Persimmon

    Researchers personal motivations

    Professor Alan Goodman - his wife has had it for 22 years. Goodman is a biological anthropologist who initiated an event to motivate academics from both medical and non-medical disciplines to study and publish on ME/CFS. For further details, refer to the PR thread entitled "Massachusetts...
  17. Persimmon

    Massachusetts professors get pre-release screening of Forgotten Plague, go off to write papers

    Outline of the event: https://www.umass.edu/issr/sites/default/files/CFP%20Mellon-FCI%20Integrative%20Biocultural%20Approaches%20Seminar%202015.pdf Can anyone explain who funded this, and what motivated Professor Goodman to take this initiative? I hadnt heard of him before; and according to my...
  18. Persimmon

    Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individua

    When Newton disclosed preliminary findings from this trial (that were reported in The Times newspaper several years back), she reported that ME/CFS muscle tissue exhibited abnormal lactic acid accumulation in response to simulated exercise. That outcome was consistent with the findings of her...
  19. Persimmon

    Measures of outcome for trials and other studies

    Including objective measures would be a massive step forward. It would provide credibility and bypass the politics. To address patient heterogeneity, I'd like to see studies with narrow cohorts Eg only include patients who meet CCC and who fail a tilt table test. (You could try to generalise...
  20. Persimmon

    New era for ME/CFS research as top cytokine study attracts media headlines

    @Simon Thanks for another really helpful blog. A few questions: (1.) Do we have access to a study design protocol for this study, of the type submitted to clinicaltrials.gov or used in NIH funding applications? (ie a detailed description of what they intended to do, that was prepared prior to...
  21. Persimmon

    Fatigue: late night or early morning type?

    During the initial phase of my ME (sudden onset) I slept many hours per day and felt sleepy-tired - as one does with a cold / flu / mono. After that early period, my "fatigue" transformed in nature. This change was part of a broader symptomatic metamorphosis I gradually underwent - an...
  22. Persimmon

    Do MEs cause CFS?

    @ Jonathan Edwards Might some ME cases be caused by persistent enteroviral infection? While this idea has been around for decades, Dr John Chia is currently carrying this baton. He thinks there are a number different MEs, and that some (only) of these are caused by persistent enterovirus...
  23. Persimmon

    CDC: CFS not subject to opportunistic infections?!

    @ Professor Edwards, If we're talking about there being a number of different ME's, wouldn't that mean that there could be immunodeficiencies specific to particular forms of ME? In such circumstances, is it reasonable expect at least 80% of all ME cases to exhibit the same immune abnormalities...
  24. Persimmon

    Do MEs cause CFS?

    @ Jonathan Edwards Would you please outline how such a demographic study would be conducted.
  25. Persimmon

    Can ME/CFS patients in the UK choose who they go to see on the NHS?

    @ Jonathan Edwards, let me join the quorum of those delighted and enthused by your PR participation. What about Ampligen? At the most recent FDA investigation into whether to approve Ampligen for "CFS" patients, the FDA's expert panel voted that this treatment was safe, but that it had not...
  26. Persimmon

    Researchers personal motivations

    Olav Mella - his sister-in-law contracted it
  27. Persimmon

    Researchers personal motivations

    Gerhard Gottfries - Contracted ME/CFS himself (during the 1950s) Lars Lagerstrand - Contracted ME/CFS himself Emeritus Professor Carl-Gerhard Gottfries (born 1928) was a professor of psychiatry and used to be chief physician of a substantial hospital in Sweden. His career has focused on the...
  28. Persimmon

    Researchers personal motivations

    Marcie Zinn PhD has ME/CFS herself She is a Stanford neuropsychology researcher who focuses on brain imaging
  29. Persimmon

    Researchers personal motivations

    Ron Davis - his son Whitney contracted it (severe case) Ron Davis is a very senior geneticist at Stanford
  30. Persimmon

    The Names of Research Centres

    Just noticed - Montoya has changed the name of his ME centre. It's now called the Stanford Myalgic Encephalomyelitic / Chronic Fatigue Syndrome Initiative. They abreviate this as the Stanford ME/CFS Initiative. It used to be called the Stanford Chronic Fatigue Initiative. They are, however...