• 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, 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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    Another Psychological Disease Bites the Dust: PTSD Now Believed to Be Physical

    I agree @lansbergen, labels dont always = disease there have been some honest attempts over the years to find out what is wrong with me. differential diagnosis is difficult because so many things overlap. no way do i have 15 discrete diseases. but some doctors think i do. thats the problem...
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    Another Psychological Disease Bites the Dust: PTSD Now Believed to Be Physical

    please excuse spelling grammar. soory this will be long, i know people struggle with long things, i do. but i have to write it in one go or my brain will explode and ill crash. so i have to write a long one. since i got ill i have vivid flash backs to non traumatic events. completely irrelevant...
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    Identities and the Internet

    i would love to contrbut to discussion more but i cant becausw my brain doesnt work properly when it works better i have to prioritize and unforyunately participating in forum discussions has to be low priority things like food and shower comes first
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    ME Assoc. June survey - Vit. D testing

    In my case the low Vit D had nothing to do with lack of sunlight or lack of physical activity. When I was first getting ill and only mildly affected, I worked a very physical, outdoor job in the middle of the desert. No shortage of physical exercise and sunlight, yet my vitamin level was very...
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    Why patients with CFS/ME improve or deteriorate with graded exercise therapy

    I WANT TO STAB MYSELF IN THE EYEBALLS BEING FORCED TO DO EXERCISE DESTROYED ME REAL QUICK AND I NEVER GOT BETTER MESSAGE TO PSYCHIATRISTS - STOP FUCKING DESTROYING LIVES. IF YOU ARE GOING TO PRESCRIBE EXERCISE YOU HAD BETTER WELL BE DAMN SURE IT WON'T CRIPPLE THE PATIENT, LIKE YOU DID WITH ME...
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    Norwegian professor in biology supportive of PACE

    Thank you Prof Edwards!
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    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    Looking at the list of people involved in the NIH study, Ian Lipkin should be a good antidote to the likes of Walitt. Lipkin has said on numerous occasions, quite clearly, that he believes ME to be a biological disease, and not psychiatric. Ian is definitely interested in finding biological...
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    Extended B-cell phenotype in patients with ME/CFS: A cross-sectional study

    A paper has just been published in 'Immunity' by a different team at UCL. A Regulatory Feedback between Plasmacytoid Dendritic Cells and Regulatory B Cells Is Aberrant in Systemic Lupus Erythematosus It concerns Lupus / B cells contributing to SLE / response to Rituximab possibly determined...
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    Symptom management for moderate to severe symptoms (UK)

    Hi Oak, Not having access to a car is obviously a problem. Sometimes the dole will pay for taxi's to medical appointments if you are too disabled to use public transport. In some areas the NHS also provides transport, a kind of non-emergency ambulance service. A minibus basically. Maybe...
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    Universal heteroplasmy of human mitochondrial DNA

    Ron Davis/Open Medicine has a new member join the Scientific Advisory Board - Dr. Robert K. Naviaux, MD, PhD. http://www.openmedicinefoundation.org/2016/02/10/welcome-dr-naviaux-to-our-team/ "Dr. Naviaux runs the Robert Naviaux Laboratory at UC San Diego, which is doing genetic research into...
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    NIH phonecall and Q&A, Tues 8 March

    NIH talk about wanting to bring in high quality researchers and create some momentum. I can't help but think back to last year when NIH refused point blank to fund Ron Davis (Lasker Prize winner) and his three Nobel Laureate colleagues. If three Nobels and a Lasker isn't good enough then what is?
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    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    Sonya Marshall-Gradisnik is a signatory to The OMI-MERIT initiative. Is the research being done at Griffith really that bad? Why the dismissive comments about her work? Am I missing something here? Lucinda Bateman, MD (Fatigue Consultation Clinic & Univ of Utah, UT, US) Alison Bested, MD...
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    Telegraph Tomorrow - Exercise and positivity can overcome ME

    Telegraph article saved in Internet Archive/Wayback Machine for posterity- https://web.archive.org/web/20151028083213/http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html As it appeared on...
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    My recommendation for Doctors and professionals in Auckland, New Zealand

    Dr Rosamund Vallings is a fantastic doctor. I can't speak highly enough of her. She was one of the authors of the 2011 International Consensus Criteria so she knows her subject in depth. Dr Ros is also a truly compassionate person, and won't treat you like an anonymous statistic. I found that...
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    Do you have positive ANA speckled pattern?

    Hi Taniaaust, Cant write much just now. My veins thing gradualy got worse at the same time as the rest of the ME stuff over a number of years. I'll try write more soon...
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    Do you have positive ANA speckled pattern?

    Hi Strawberry, good point about astrology charts and selectively comparing information. That could very well be happening here! It's interesting that similar symptoms and problems do keep coming up. I was told that what is happening to me isn't anything unique or special, and that many people...
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    Do you have positive ANA speckled pattern?

    Hi Justy, your symptoms and results sound similar to mine as well! I think I've got less blood results than you, as I have had less immune system stuff tested. I'm in no rush. I got low Vit D, cortisol, iron. Failed Romberg test after 2 seconds. There are some more but I don't have them to...
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    Do you have positive ANA speckled pattern?

    If anyone is interested in seeing the mind boggling complexity of ANA patterns, check this out- http://www.palpath.com/MedicalTestPages/Table_anatable.htm There must be something like 30 or 40 different patterns, with all kinds of overlaps between many illnesses. There are about a dozen...
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    Do you have positive ANA speckled pattern?

    Interesting, Justy. I've just developed what has been diagnosed as an allergy, which started literally overnight. I have never had any allergies previously. It affects my eyes and makes my skin itch everywhere. I haven't had any testing done, so it might not actually be an allergy, but the doc...
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    Do you have positive ANA speckled pattern?

    Hi Strawberry, A few things you mention are familiar to me. My illness was slow onset. There were periods of partial remission initially, until the thing became permanent. I'm a bit reluctant to say too much as I kind of want to stay anonymous. My current doctors are fantastic, but previously I...
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    Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

    SEID isn't perfect but the best thign about it is that it isn't CFS. We need to make a clean break from CFS, completely fresh start. Cut CFS off at the knees and let it rot. I believe this is once in a generation opportunity to have "our own disease", so to speak. Even if the proposed name...
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    Update on Karina.

    Hi Gingergrrl, I understand what you mean. In Denmark the government owns and runs virtually all the hospitals. Almost the entire health care system is government run. The government pay for whatever treatment is needed. Hospitals have a budget based upon how many patients they expect in a year...
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    Update on Karina.

    Health care in Denmark is state run and state owned and state paid for and state everything. It's a totally different system to what exists in the U.S. Denmark, and Scandinavian countries in general, are extremely big on biopsychosocial stuff and somataform disorders of every shape and kind...
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    You think ME is bad - try having a "Psychogenic movement disorder"!

    Psychogenic sleep disorder
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    Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

    I love a good puzzle. Here is a crossword I just did. I was so easy! Now I'm going to write a book and cure ME.
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    Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

    The UK 3-day first aid courses that the Health and Safety Executive recognize cover the following. Possibly this is the syllabus Zoe followed. I guess stuff like eye injuries are not relevant to ME. What does that leave? The role of the first aider Managing an emergency Health and safety...
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    Do you have crimson crescents?

    How interesting. I looks like I've got them as well. Is this a common finding in 'healthy' people or people with other illnesses? I can't find much information. I have had a permanent sore throat for decades.
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    BMJ comments on new PACE trial data analysis

    Describing PACE as a political problem really sums it up well. I believe getting the raw data would be the best thing. Some (or all) of the trial was paid for with taxpayers money. Shouldn't taxpayers see the data? I seem to recall that a previous freedom of information request for the trial...
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    BMJ comments on new PACE trial data analysis

    Esther12, I agree with you, I think what you say is right. I'm just so tired of thsi whole PACE thing. It just never goes away. Those media reports have really got on my nerves. Take care.
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    BMJ comments on new PACE trial data analysis

    Thanks for that thoughtful and considered reply to my bit of a rant, Prof. Edwards, especially at this time of night. I do appreciate that you often spend unsociable hours at weekends dealing with the likes of me. Thanks. Ok, maybe 200 papers is overdoing it a bit, that's obviously a random...