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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. allyb

    Increased prevalence of two mitochondrial DNA polymorphisms in functional disease

    Increased prevalence of two mitochondrial DNA polymorphisms in functional disease: Are we describing different parts of an energy-depleted elephant? Jonathan Kerr et al..... Abstract About 20% of the population suffers from "functional syndromes". Since these syndromes overlap greatly in terms...
  2. allyb

    In Memory of Jonathan Hales.

    So very sad another ME hero Jonathan Hales, 48, lost to our community after decades of immeasurable suffering. ............... relieved to see a more respectful write up from the Daily Mail. Thought it did refer often to Mental Health....it did also reiterate his 'Physical illness.' I...
  3. allyb

    Psychologists' Study Proves They Are A Bunch Of Humourless Prats

    OK OK so I've edited it a little................:angel: Do I think I'm a comedian???.........(with ME :jaw-drop:) gosh CFD.... Chronically Funny Disease....a new one for the DSM Mr :nerd: Psychiatrists have Narcissistic psychotic personality traits, study finds (Reuters) - Having an unusual...
  4. allyb

    Another Medical Kidnapping

    Hi folks............ It says in this article that I will post a link to; that the court case is today! when will this lunacy end :( http://www.sott.net/article/270724-Parents-lose-custody-of-teen-after-seeking-2nd-medical-opinion-girl-indefinitely-detained-in-psych-ward
  5. allyb

    Recognizing Paradoxical Folate Deficiency in Papers

    Dear Freddd, Thank you for your reply....I began with the B12 as per your suggestion which I tolerate fine.....in fact the conitive improvements in the beginning were note able.......then when I add a small amount of methylfolate I suffer from a crushing change in mood that is totally alien to...
  6. allyb

    Recognizing Paradoxical Folate Deficiency in Papers

    Freddd, Please could I ask if a “Paradoxical Folate Deficiency/Insufficiency” could manifest as showing high levels of red cell folate? These were my results......... Active B12 *>256.0 pmol/L 25.1 - 165.0 Red cell folate *1667 nmol/L 158 - 1099 I DO NOT take any kind of...
  7. allyb

    Kombucha Tea

    I have recently made it......an acquired taste but I like it...... you can use nettle tea or rooibos which will cut down on the caffeine but it is debatable as to whether the sugar is really all used up in the processing....it sure taste sweet and sadly I don't tolerate sugar......it also...
  8. allyb

    Dr Daniel Peterson Speaking in Stockholm.

    Apologies if this has already been posted before as its dated October 2013. I only saw it today posted on FB page of Voices from the Shadows and thought I'd share it. :thumbsup:
  9. allyb

    If we have low blood volume where does it go?

    If we have very low blood volume, when we have a blood tests.......would this alter the results of the tests? I have noticed that my, sodium and bicarbonate are all higher than they should be and potassium is at higest end of normal
  10. allyb

    Name change for CFS?!

    How patronising........chronic multi-symptom illness = sounds like someone with a bad case of hypochondria :mad:
  11. allyb

    Worried

    Thanks @Bob :) And just to update you kindly folks.................in desperation I cut n pasted that last message to Canary in a Coal Mine..............and Jen bless her email me back and said she'll sort it ally
  12. allyb

    Worried

    :angel:Thank you so much all for your advice…….I have changed my passwords and I’m working through the rest……. (my security in Webroot Complete.) And I will update you kindly folk, when I get a second wind…. Please could I run the rest of the farcical, energy stealing situation by you…………… My...
  13. allyb

    Worried

    Just a word of warning for anyone who donated to Canary and a Coal Mine...payment was through amazon and I got an email saying mine had been denied today....but then I got one with the same amazon logo asking me to fax me a credit card bill to verify my identity. As brain fogged and ill as I...
  14. allyb

    Mitochondrial energy optimizer: anyone tried it?

    Interesting read thanks Jimmy, Just bumping up the thread......has anyone else tried PPQ either as a stand alone mitochondria enhancement or as a combination Mitochondrial Energy Optimizer with BioPQQ?? The guys discussing it in the link say it works opposite to NAC. It would be great to get...
  15. allyb

    Help for the bedbound and severe

    Have you tried the 25% group Justy?..........though they have limited resources they have an (overstretched) advocacy service for people with severe ME. http://www.25megroup.org/home.html 25% ME GROUP 21 CHURCH STREET TROON AYRSHIRE KA10 6HT Telephone: Main Office: 01292 318611 - Office Hours...
  16. allyb

    Opinions on Vitamin D long term?

    Thanks for the thread Charles555nc......this is an important topic that confuses me......... I watched the KDM clip but didn't quite get to grips with it. I get NO sun what-so-ever sadly......because even sitting in the shade with my feet exposed puts my heart rate up 60+ beats. Maryb...
  17. allyb

    MAO-A Poll

    I am homozygous for MAO but have never suffered from mental or mood problems..............thankfully and I am grateful everyday that despite that severe level of illness and disability that I encounter since my sudden onset; that I do not also bear the burden of depression. I do know that this...
  18. allyb

    Memorial Thread: M.E. HERO’'s gone but never forgotten.

    M.E Hero...................gone but NEVER forgotten. 25th September Rich Van Konynenburg I can never forget this day last year.... It was my 50th birthday..........our community was rocked, we lost a true warrior; a gentleman and an M.E. pioneer. At the time I never wrote a thing.... I was...
  19. allyb

    Fobbed off by your doctor? Now a second opinion from an expert is just one phone call away

    Fobbed off by your doctor? Now a second opinion from an expert is just one phone call away I had NO idea this establishment existed, I had never heard of the Honorary Doctors' Association...
  20. allyb

    Help needed for elderly aunt - osteoporosis

    Hi Maryb,.... So sorry about your aunt. Long shot but for what's its worth you might have a look at this.... Algaecal plus and there is also Strontium Boost I know someone with osteoporosis and ME and who takes Algaecal plus; she is also sensitive to Meds. It's from good old Canada!! like...
  21. allyb

    Low Blood Volume - mine now proven by Red Cell Mass test

    Thank you Sherlock, Dur me! must be my dyslexia, when I was a kid I used to write about it....... in my 'Dairy' :D I'd blame it on the brain-fog but today was a good day and I wasn't even standing!:redface: The info and link is much appreciated, I need to read it more thoroughly...
  22. allyb

    Low Blood Volume - mine now proven by Red Cell Mass test

    Hi Ally, As Sasha says so eloquently puts it a cause for celebration :balloons: to bring the imaginary in to the realms of REAL; proof and a spring board for some kind of treatment. Will you diary your journey from here Ally? Was the testing difficult to obtain and could you tell us a little...
  23. allyb

    High serum B12 WITHOUT B12 supplements. What could this mean?

    Hi All, Thank you NilaJones for posting this. I was going to start a post of my own but my high B12 issues are somewhat similar so I thought posting here might bump up the thread and hopefully catch someone's attention. Hopefully it will benefit others too. Last April 2012 I had standard...
  24. allyb

    Professor Malcolm Hooper presented with prize at IiME conference

    Mine too Mary, A Norwegian Honour (typical) the Norwegian's recognise his worth but then again they recognise ME/CFS as a terrible physical/neurological disease. I think he is a PERFECT candidate for a knighthood.
  25. allyb

    Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

    IMHO You can engineer most research to FIND/CONCLUDE most things as long you as you stick stringently to the rules of academia. (Compiled by the academical hierarchical institution, revered by them, sustained by them and controlled by them) You could pretty much conclude the moon was blue...
  26. allyb

    Memorial Thread: M.E. HERO’'s gone but never forgotten.

    Just the other day, I read “Forget M.E. not” by Alison Hunter and I realised that she wrote it 20years ago this year! Her words, oh -so- wise for someone so young, so poignant and pertinent that it could have been written yesterday. Alison died in 1996 aged 19 she was a true ambassador for...
  27. allyb

    Researchers, breakthrough in finding a cure for HIV “within months”.

    Researchers believe that there will be a breakthrough in finding a cure for HIV “within months”. http://www.telegraph.co.uk/health/healthnews/10022664/Scientists-on-brink-of-HIV-cure.html Danish scientists are expecting results that will show that “finding a mass-distributable and...
  28. allyb

    Strange things are happening/ Is this OI?

    Hi Shell, So sorry to hear you have had such a rough time. I have a very good friend with EDS III and PoTs who has been on Ivabradine for over a year (maybe nearer 2) she swears it has completely changed her life for the better. She isn't on PR but if you wanted to ask her anything; swap...
  29. allyb

    Update on Alex3619: in hospital but doing well

    Hi Alex, It's so good to see you back. I note you have been kept busy with hospital politics and it sounds like you are being looked after by a rather handsome/attractive bunch. You didn't mention a 'red head' so this is Ruby (real name) She is an advocate for ME (myself)...
  30. allyb

    Simon Wessley replies

    Thank you Mr Reid. I just want to add that Simon Wessely does this in true psychobabble style, as always; by projecting that it is the Countess of Mar who is the perpetrator in publicizing what is already public, thus effectively projecting blame. Over the years he has postulated this...