• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Countrygirl

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    Millie update. 18 Mar 2024 Millie has an official ME/CFS diagnosis. On 15/03/24 Dr Weir sent a very clear letter stating that Millie’s diagnosis is ME/CFS and for this to be added to her medical records. For over a week now Millie has been telling us and the hospital that she feels her body...
  2. Countrygirl

    Dr David Tuller: Professor Chris Ponting on the NIH’s Findings and the Latest on the Genome-Wide Association Study Update

    https://virology.ws/.../trial-by-error-professor.../... Trial By Error: Professor Chris Ponting on the NIH’s Findings and the Latest on the Genome-Wide Association Study Update Leave a Comment / By David Tuller / 17 March 2024 By David Tuller, DrPH
  3. Countrygirl

    Dr David Tuller:Guardian Columnist George Monbiot Calls Out the GET/CBT Charlatans and the Fraudulent PACE Trial

    https://www.theguardian.com/society/2024/mar/15/why-mecfs-is-still-so-poorly-researched-and-treated The responses are published. Prof Sharpe and Prof Garner's letters are published. Only Charles Shepherd's of the letters from the ME expert's was accepted.
  4. Countrygirl

    Dr David Tuller:Guardian Columnist George Monbiot Calls Out the GET/CBT Charlatans and the Fraudulent PACE Trial

    This is the Guardian article as I see the thread on it is closed. https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal George Monbiot
  5. Countrygirl

    George Monbiot in The Guardian: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

    Yes, and often under another name like 'activity management'. The old guard doesn't want to let go because they built their careers and reputations on GET and denying the harm they inflict.
  6. Countrygirl

    ME Global Chronicle: Dr Nigel Speight FAILINGS IN THE CARE OF PATIENTS WITH VERY SEVERE ME (VSME)

    https://meglobalchronicle.wordpress.com/.../failings-in.../ The ME Global Chronicle New article by Dr Nigel Speight FAILINGS IN THE CARE OF PATIENTS WITH VERY SEVERE ME (VSME) GEPUBLICEERD OP 12 maart 2024
  7. Countrygirl

    Dr David Tuller: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?

    Activity Management is GET-Lite, not pacing as it involves increasing activity.
  8. Countrygirl

    Dr David Tuller: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?

    Dr David Tuller: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’? https://virology.ws/2024/03/10/trial-by-error-will-magentas-null-results-finally-end-professor-crawleys-long-reign-of-error/?fbclid=IwAR0IfsqDKyH9CBo_sFWPLR422kJ7HVVAOlf_0rkRpjvxySycnYwO18guuiM By...
  9. Countrygirl

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    More cards. Millie continues to deteriorate under the inappropriate treatment she is receiving in the hospital. They are not prepared to follow NICE or take advice from doctors who have decades of experience in treating severe ME.
  10. Countrygirl

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    Weʼre raising £500 to for a GIFT for Millie when she returns home from hospital; 18 years old with severe ME https://www.justgiving.com/crowdfunding/bake-mecfs-formillie?utm_id=66&utm_term=aNDr9nq6p
  11. Countrygirl

    Dr David Tuller interviews Adam Lowe about NICE's Response to Uninformed "Eight Anomalies" Critique of ME/CFS Guidelines

    Adam Lowe Explains the NICE Response to Uninformed "Eight Anomalies" Critique of ME/CFS Guidelines With Dr David Tuller. https://www.youtube.com/watch?v=PdyPZAiOjAA
  12. Countrygirl

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    UPDATE ON MILLIE. We were hearing over the weekend that Millie cannot tolerate being in the hospital any longer as she continues to deteriorate under the hospital regime. This is the new update: Millie is declining further in hospital and has communicated she can only stand a few more days and...
  13. Countrygirl

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    UPDATE ON MILLIE. We were hearing over the weekend that Millie cannot tolerate being in the hospital any longer as she continues to deteriorate under the hospital regime. This is the new update: Millie is declining further in hospital and has communicated she can only stand a few more days and...
  14. Countrygirl

    Please sign to help save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

    No, they have no sway over the doctors. They are still pursuing a psychiatric label.......possibly to save face.......and the consultant claims he never received Dr Weir's excellent letter that described ME and recommended tests and treatments. He has now sent it in an email but we don't know...
  15. Countrygirl

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    If I were half-a-century younger, I would blush. She does have a NG tube but it is not supported in the community so she couldn't return home. She is now to sick anyway.
  16. Countrygirl

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    She does have a NG tube but the problem is that it is not supported in the community. To return home, she would need a PEG. However, that is now academic because as a result of the inappropriate treatment she is too ill now after 2-3 weeks in the hospital. Now they are attempting to remove...