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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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Search results

  1. Luelma

    Sensitive topic - deaths & irreversible worsening after Severe patients hospitalised

    A grim yet important question - do we have any numbers or knowledge of the number of ME/CFS deaths that have occurred after a patient has been hospitalised (and usually treated as psychologically ill or made to engage in treatments to correct their “faulty” beliefs - CBT and GET). Or any data...
  2. Luelma

    Hunt for expert statement about impossibility of knowing how many patients are Severe patients

    Re Can anyone help with my hunt for an expert's comment on the impossibility of truly knowing how many Severe ME/CFS patients there are? I vividly recall listening to Professor Leonard Jason in a talk (or film) I listened to, that it was really impossible to know the true number of severe...
  3. Luelma

    Welfare Worries: Expert quotes to explain that GP's & Hospital can't help Severe Bedridden patients

    WELFARE ANXIETIES: I urgently need some really robust, pithy quotes that I can print off because I cannot speak - so that I can explain to PIP health visitor and other welfare assessors that my GP & the NHS (neither who i've had contact with for about 3 years)have no answers; are actively more...
  4. Luelma

    Biofilm / Anti-pathogen protocol three questions related to three products

    Can anyone recommend and/or throw light on the following three questions related to natural anti biofilm/ anti-microbial plans:- 1) Are there any recommendations for the best brands of activated charcoal (to buy easily online in UK!) I've always bought J L Braggs Medicinal Charcoal that your...
  5. Luelma

    Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

    Tjh Thank you Aurator. Given the extent of disbelief and misunderstanding around this illness; it is certainly important to unambiguously state whether accompanying pictures are from a time before a person lost their health, or are current, especially if, like me, they are now bedridden...
  6. Luelma

    Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

    Oo Apologies for the understandable offence of both the headline which I begged to have changed the moment I saw it and for the photographs. I was asked to supply photos of me 'Before' my illness. I had precisely three having lost all my backed up photos and two were poor quality so, though...
  7. Luelma

    Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

    Thank you so much for your generous Thank you so much Simon for your generous words and for, instinctively knowing that I am not the headline writer. Such a frustrating shame but hopefully the content is more postively resonant for fellow sufferers! Thanks again Lucy
  8. Luelma

    Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

    Thanks Duncan - my heart sank and stomach flipped when I read the title - personally very awkward & embarrassing in terms of the accusatory tone to my friends and, of course, infuriatingly calling it term chronic fatigue. Headline writers - agh! I did requested it be changed straight away but...
  9. Luelma

    Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

    MODERATION NOTE: Lucy's post below was originally posted in a separate thread. Here is an article I wrote on the unceasing need for compassion, kindness and emotional support is in today's Daily Telegraph. I hope it might resonate and/or be helpful to share with friends and loved ones who...
  10. Luelma

    Help with Media Mission re PACE trial

    Can anyone help with any of these three queries: 1) Can anyone find out the Physical Function scores (SF-36 scores) of other serious illnesses eg Multiple sclerosis. The mean score for Congestive heart failure and Hepatitis C are 79.2 and 79.3 whereas CFS patients in the PACE trial were...
  11. Luelma

    Historically incorrect somatization illness eg MS and...?

    Thanks very much indeed - be great if you were able to find!
  12. Luelma

    Historically incorrect somatization illness eg MS and...?

    I am trying to find a robust and referencable source for this notion that breast cancer in particular was once believed to be caused by psychiatric imbalances. If you are able to point out any (referencable) research relating to this notion of breast cancer being common in certain emotionally...
  13. Luelma

    Dr Downing (clinics in York and London)

    Hi Amy, I wonder if you would email me direct Hi Amy, I appreciate this post was several years ago but I am hoping to connect with you. Before my health collapsed (age 28) and every vestige of operational life was lost in 2008, I was a freelance journalist writing for the UK nationals...