• Welcome to Phoenix Rising!

    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

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    New breakthrough research: video games to activate people with ME

    It will depend on how ill someone is and you need to be able to do 5 min of screen time without adverse effects to be included plus be able to do 5 min of exercise without adverse effects.
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    New breakthrough research: video games to activate people with ME

    This study has been massively improved as a result of the authors working with ME/CFS advocates and patients. The funding was already granted when the ME/CFS community became involved and so ditching the xbox and allostatic was never an option, but the authors have added in a lot of objective...
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    Recording of Esther Crawley inaugural lecture on February 24

    ME/CFS is pretty disinctive - post exertional exacerbation of symptoms, abnormal metabolic tests, abnormal heart rate responses. Why wait at all?? If you meet the criteria you have ME/CFS....that way people can start resting properly and improving their quality of life ASAP...
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    Making FOI requests (UK)

    Ester Crawleys's recent talk to renal specialists was all about how NOT to release information requested ie say the request is vexatious, or the person is fake, or the cost of getting the data over the 450 pound limit, or the data will be used for a publication at a future date (EC points out...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Amazing work, but you look so tired Ron, please take care of yourself, your family needs you. Even more than all of us ME/CFS patients that are hanging on your every word.
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    Wessely on air at BBC 4 Radio

    There are degrees of bad. Not keeping up with research and being up to date with heart rate monitoring is despicable. The research by Snell et al came out in 2010- so by 2014 it was readily available as were heart rate monitors and it has always been easy to meaure your HR people have been doing...
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    Wessely on air at BBC 4 Radio

    Yep the NICE guidelines clearly state that they are NOT dogma BUT Dr. Nigel Speight was referred to the General Medical Council for not following them and stood down while they investigated him....A trial was carried out by EC on to determine which NHS clinics were following the NICE...
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    Wessely on air at BBC 4 Radio

    Never ceases to amaze me why the easy observable and measurable physiological signs of ME/CFS are NOT used to identify the disease and help people manage too identify how much they need to rest?? Why not a simple heart rate monitor and the NASA stand test (used by the Bateman Horne Centre) will...
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    New Org!: ME/CFS International Alliance

    In Australia people have asked EMERGE not to be associated with Action for ME. The history is not good they used to have a close relationship and EMERGE had a very fractured relationship with the rest of the societies in the other states.... the previous CEO kicked Action for ME out and they...
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    New Org!: ME/CFS International Alliance

    The CSS theroy does fit with some of the research which has found genetic problems on the innate immune system resulting in over reaction by the stress receptors.... a physical problem. I think rather than worrying about the cause we should focus on the research...the reason CBT and GET PACE -...
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    New Org!: ME/CFS International Alliance

    They are the International Alliance-
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    New Org!: ME/CFS International Alliance

    Action for ME are not about supporting patients....more about supporting Ester Crawley, Peter White, Simon Wessley etc....it will be a great shame if the USA gets sucked into their vortex...of support for crappy general fatigue state studies...that most surprisingly enough don't do us any good...
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    New Org!: ME/CFS International Alliance

    Scary stuff ...this is Ester Crawley, Sonya Chowdry, Peter White et al.....they want to gain support for the CMRC - which in theory is a collaboration of ME/CFS researchers BUT only researchers vetted by Ester Crawley are permitted to join. To join you need to sign a gag order that you will...
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    Dietary and nutrition interventions for the therapeutic treatment of me/cfs

    This study found that basically nobody has published good trials on the diets of people with ME/CFS, BUT many patients do know which foods they can no longer tolerate. The whole idea behind elimination diets is that you eliminate foods and then try reintroducing foods as you can. If you...
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    We need your GET story to publicise #stopGET petitions

    I tried PACE style, GET when first ill and rapidly became bed ridden with profound ME/CFS, and had many doctors advocated that I just get out of bed and walk. Now I am improving, the turning point for me is heart rate monitoring, staying under my anaerobic threshold. That has entailed 14...
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    FredaF

    https://app.secure.griffith.edu.au/news/2016/12/01/4m-grant-to-aid-chronic-fatigue-syndrome-diagnosis/
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    diagnostic test.......its real its here .....but will take years to get it to market.....

    https://app.secure.griffith.edu.au/news/2016/12/01/4m-grant-to-aid-chronic-fatigue-syndrome-diagnosis/
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    New Org!: ME/CFS International Alliance

    Its really important that Carol Head and Jen Brea are made aware of the history as I'd be stunned if either of them would support Sonya Chowdry if they were aware of the big picture. Sonya Chowdry using the "International Alliance" to voice concern about Shorter, was most likely a way in, to...
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    New Org!: ME/CFS International Alliance

    Sonya Chowdry has been trying to form an International Alliance for some time and was in contact with EMERGE, a charity group that represents 3 states in Australia. Members raised concerns and were fobbed off with the claim that this is not a "formal" alliance.... Sonya Chowdry is the mouth...
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    The New MEGA poll

    It is very easy for MEGA to address our concerns. 1. Get rid of 2 particular people - who make outlandish and misleading claims. 2. Use CCC as an entry criteria and stratify for PEM, ICC, IOM as well. A bonus would be to: 3. Build on the already existing bio-bank of 500 samples. 4. Build on...
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    The New MEGA poll

    Yes and it wouldn't be hard, this is what the NCNED did.
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    The New MEGA poll

    "notable UK charities" - is undefined. Invest in ME has severed us extremely well as have the Tymes Trust and 25% severe ME... Whereas AfME and AYME are harmful and linked to the bps people.
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    The New MEGA poll

    Opps - the study would need to measure orthostatic intolerance, heart rate abnormalities on exertion, resting heart rate, temperature, maybe use the rhomberg test, establish the physical functional capacity of entrants (Maybe by 2 day CPET, where possible) maybe by oxygen usage, or on the...
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    The New MEGA poll

    The other major problem with MEGA is the symptoms that they say they are interested in aren't those of ME-ICC or ME/CFS-CCC....eg PEM, sore throats, glands, headaches....instead its stress, depression....
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    My meeting with The Minister for Health, Simon Harris, TD

    Wonderful job. Actually the Canadian Consensus Criteria and the International Consensus Criteria- list a number of physiological and biological abnormalities that show up....chances are that you may have measurable, quantifiable orthostatic intolerance, tachycardia, low body temp....a CPET test...
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    The MEGA project: poll on what you consider acceptable--version 1, closed for further comment

    PACE spent 8,000 pounds per person (641 people) and was low tech/no tech. How on earth could MEGA study 12,000 samples? Peter White has been talking about a study like this for years- looking at biomarkers for stress, fatigue, depression, anxiety. MEGA does not look like a study on ME/CFS at...
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    The MEGA project: poll on what you consider acceptable--version 1, closed for further comment

    When you say diagnostic criteria its not clear what you mean. I voted as is if you mean the CCC with mandatory PEM ie as per the NIH. Patients do not need to be measured against the 22 criteria just the CCC and or ICC. Another problem is the lack of ME/CFS symptoms listed in the protocol -...