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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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    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    With respect Barb you completely misunderstood my point. I wasn’t suggesting she had ‘made a deal with the devil’. I pointed out that she did not reference him directly. I thought her article was quite poor. She said she hadn’t mastered the information in the report yet felt qualified to...
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    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    Out of curiosity I had a look at Hall’s article ‘Gulf War Syndrome or Gulf War Mythology. It discussed a report by ‘The Research Advisory Committee on Gulf War Veterans' Illnesses’ for 2008. Hall stated: ‘I can't pretend to have mastered all the information, but I have read enough to understand...
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    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    Harriet Hall is an ex-military physician with an interest in Gulf War Syndrome. Presumably she is aware of Sir Simon’s work on GWS. Whether she knows him personally or not I don’t know. That would be pure speculation—like her blog...
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    Australian Dr finds 95% of his 300 M.E patients have evidence of Lyme.

    The response of the Australian authorities was largely due to the findings of a huge tick study in the 90’s that found no evidence of Borrellia borgdorferi or other spirochaetes in Australian ticks. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2271457/ Given the growing evidence about a...
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    Australian Dr finds 95% of his 300 M.E patients have evidence of Lyme.

    I thought this might be of interest: 'Lead researcher, Professor Peter Irwin of Murdoch University, has been collecting ticks from around Australia to study whether they carry disease-causing bacteria. “We did not find any evidence of the Lyme disease-causing bacterium Borrelia burgdorferi...
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    Potassium Arsenite 0.05% Cures CFS in Falcons, so what about humans?

    To my knowledge the label CFS is not routinely used to diagnose animals. Dr Tarello used the CDC criteria here: 'To evaluate the association with a presumptive staphylococcal infection and bacteremia, seven dogs and eight cats diagnosed with CFS (two meeting the CDC working case definition)...
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    Potassium Arsenite 0.05% Cures CFS in Falcons, so what about humans?

    Respectfully, it does imply that you can’t use the CDC working case definition to diagnose it in animals. I would also assume that treating yourself and your wife in this way was both off label and illegal in many parts of the world.
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    Potassium Arsenite 0.05% Cures CFS in Falcons, so what about humans?

    There are many excellent scientists with a background in veterinary science such as Dr. Peter Doherty (Nobel prize for medicine 1996 for research in immunology). In regards to these articles on supposed CFS in other species there are so many problems (red flags) that it is difficult to know...
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    Reading on paper vs on screen

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

    I agree with you Tania. That he got no help at all, of any kind, is scandalous and distressing. The UK may have signed the UN Convention on disability rights, but doesn’t seem to live up to its obligations. E.g. (j) Recognizing the need to promote and protect the human rights of all persons...
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    Nick Brown (good science star): My (current) position on the PACE trial

    A colleague of mine once received a death threat. Animal rights activists mistakenly assumed her research involved animal experimentation. There was a police investigation and some commotion around the water cooler. To my knowledge she never prefaced future presentations by discussing the...
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    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    The wording of the response is odd: ‘In conclusion, the university considers that when applying a holistic approach, this request can properly be considered to be vexatious.’ https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf “The...
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    Ben Goldacre: checking if clinical trials reported what they said they would

    Ben Goldacre has said many things that I agree with. For example: “Anyone withholding the methods and results of a clinical trial is already in breach of multiple codes and regulations, including the Declaration of Helsinki…” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396123/ I don’t know...
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    Ben Goldacre: checking if clinical trials reported what they said they would

    Should have put a warning on that link. Fatuous twaddle can’t be unread. I like the bit at the bottom though. ‘This is the Kruger-Dunning effect—the state of being too stupid to know how stupid you are being.’ It seemed apt.
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    Ben Goldacre: checking if clinical trials reported what they said they would

    http://www.download.thelancet.com/journals/lancet/article/PIIS0140-6736%2815%2960588-8/fulltext
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    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    It sounds like you had a long tough fight in your heroic efforts to help Brian. I hope it didn’t have an adverse effect on your own health. I hope Brian makes use of the file you collated. He seemed to want to involve the press. Best to find someone outside the UK. When a person has been...
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    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Fours years is a long time to be institutionalised regardless of the diagnosis. Does Brian have someone, perhaps a family member, who could ask to speak to the head of the institution to discuss his case? I presume he has the right to a second opinion? Dr Nigel Speight or @charles shepherd may...
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    The Mental Elf: Simon Wessely on PACE

    Ah Sir Simon, if only you would just apologise and move on. To carry his analogy further I suggest that the (not so) good ship PACE is now floundering on the rocks and rapidly taking on water. Hopefully soon to sink down down beneath the murky waters of retraction, within the straits of...
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    Do MEs cause CFS?

    @Jonathan Edwards Hi Professor Edwards, As you probably know the development of signs suggestive of autoimmunity (see below) seem to be related to a response to immunotherapy in the treatment of melanoma. I keep getting the feeling that there is something important here that I am missing, like...
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    Science at the UK CMRC Conference, 1-2 Sept 2014

    MeSci or Professor Edwards mentioned immunohistochemistry a few pages back. I did a quick search for immunohistochemistry on brain tissue in ME/CFS but didn’t find much. One study was reported in conference notes of a symposium on ME/CFS in Australia (page 14) of a single case of idiopathic...
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    My Rituximab experience with RA and ME

    The flushing could be a sensitivity reaction. Happens with chemotherapy sometimes. Paula's choice has a product called Redness Relief that I'm told is helpful.
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    de Meirleir's involvement in 'catastrophisation' studies

    Don’t worry Alex. I didn’t go back. It was a shame though the physio before this one was really good. He had been in a hospital and worked with people with severe ME. Having seen severe ME he took ME/CFS very seriously. His approach was very slow and gentle—mostly hydrotherapy. No pushing beyond...
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    de Meirleir's involvement in 'catastrophisation' studies

    Apologies, just catching up. Perhaps they need deprogramming Alex … or at least an intervention. @NK17 I had a bad flare up after physiotherapy. The physio was busy writing up and insisted I keep going after I’d asked to stop. Being competitive (I was athletic before ME/CFS), or an idiot, (or...
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    Science at the UK CMRC Conference, 1-2 Sept 2014

    The talk about sensory processing reminded me of an article I read about sensory processing disorder (SPD) in children. I was interested because some of the symptoms the children experienced were ones I was struggling with—sensitivity to sound, light etc. Also how this sensitivity could change...
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    Prolonged Fatigue [CFS] & cytokines post-West Nile Virus Infection, in USA

    @Simon Hi, Was the initial WNV infection confirmed by rising antibody titres or real-time reverse transcription PCR (rRT-PCR)? Did they say why they only tested IgM? IgM may indicate an acute infection (IgG neg initially), though it will persist in some cases (IgG pos) and may occasionally be...
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    Do MEs cause CFS?

    It would answer a personal question of mine. Which is: ‘How much worse can this get?’ Thank you for replying.
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    Do MEs cause CFS?

    @Jonathan Edwards I was just wondering whether the different MEs would have any prognostic value. Which of the groups would be most likely to lead to severe ME?
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    Pilot survey for attention and concentration study

    I suggest that a more useful survey would involve questions about why people with ME (PWME) distrust researchers from King’s College. King’s College promotes a bastardised form of Cognitive Behavioural Therapy (CBT). It has little to do with CBT as discussed by Dr David Burns (Stanford...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    This may not relate specifically, but given the interest in NK cells in ME/CFS I thought it might be of interest. NK cells may be important in improving the efficacy of chemotherapy and immunotherapy in cancer treatment. Though the evidence is preliminary, pre-treating with chemotherapy seems...
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    Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

    Apologies to Jessie J, and the writers (Simmons, Bobby Ray Jr. / Cornish, Jessica / Gottwald, Lukasz / Kelly, Claude) of the lyrics to ’Price Tag,’ for corrupting them so utterly: It’s all about the money, money, money It’s all about the money, money, money It’s not about the science It’s...