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  1. M

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Perfect, that date ties in with the beginning of the WHO Patient Safety work. Thank you @Peter Trewhitt
  2. M

    Myeloid-Specific JAK2 Contributes to Inflammation and Salt Sensitivity of Blood Pressure, 2024, Saleem et al.

    In 2018 I was diagnosed with secondary polycythaemia after a negative JAK2 test. From the limited amount I can understand from this, it's interesting on the hypertension. Although I'm very careful about salt intake and haven't been tested, I'm still having twice a day blood pressure tests as...
  3. M

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Question: Can anyone easily point me towards a link to the relevant review which was current in 2011?
  4. M

    Relaxing music for sleep

    I've been listening to Rap for decades. I have an extremely eclectic music taste. I think the rhythm and speed is soothing in this one, but high pitch in the background is too much for me. Thanks for the pointer, I'll have a listen out for some of their work.
  5. M

    Relaxing music for sleep

    been listening to Simon Callow read a Christmas Carol this morning. He speaks very slowly, which I find quite calming.
  6. M

    Relaxing music for sleep

    Before going to bed last night I was listening to Travis my favourite is Sing. I always wash away or celebrate the day with either comedy or a song. Sometimes of course nothings helps. Last night it was a song. Today I heard on the news that the lead singer sang why does it always rain on...
  7. M

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    Thanks for this snippet Sasha, did not know that!
  8. M

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    In clinical negligence, it is the job of the civil courts to find it. First, there must be a harm done. So a claim must first establish harm, and then establish causation, mitigation and finally blame. Then there is the human rights aspect and the UN Convention of the rights of persons with...
  9. M

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    That's when the legal system has to step in and decide. ETA I'm also a member of the 25% M.E. Group.
  10. M

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    Thanks but don't be sorry Sasha, I believe that everything happens for a reason we don't always understand at the time. I guess this is why I survived.
  11. M

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    My personal complaint to Cochrane (which I've just begun to draft) includes my entire medical history, which includes a diagnosis of 'anorexia' due to 'self-neglect' at the age of 62. Apparently, when the DWP stop all your benefits because you're too ill to respond and you begin the process of...
  12. M

    Brief Outpatient Rehabilitation Program for Post-COVID-19 Condition, Nerli et al, 2024 - with comment from T. Chalder

    Ditto to al the above. especially 'new and emerging' and 'effective and safe'. Don't forget UK Covid Inquiry (including Long Covid) still ongoing...
  13. M

    Aripiprazole as protector against COVID-19 mortality Munecas et al 2024

    For those it has helped I am genuinely pleased. However, it must first be safe. There's a difference between feeling that I've been harmed, and having a note of that harm in the form of new diagnoses which are the common side effects of this drug on my medical records and for which I have...
  14. M

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Further context - I think it's also 50 something working days since the publication of the Regulation 28 Prevention of Future Deaths Report regarding Maeve Boothby O'Neill. NHS England » Action to Prevent Future Deaths reports (Regulation 28). The importance of complaining and recording...
  15. M

    Aripiprazole as protector against COVID-19 mortality Munecas et al 2024

    This is SO DANGEROUS! This is an off label use, and it results in some very serious side effects which can and has led to stroke and death. I've been on it for 3 years and have just been in a virtual ward at home because of it. ME Association Statement: Aripiprazole (Abilify) & ME/CFS - The...
  16. M

    Poll: To what extent are you (PwME) still shielding from Covid?

    I used to, it was mandatory in prison, but I don't recall it being in the Cygnet secure hospital I was sectioned to, the staff were masked but I dont remember periods of that time due to the meds they put me on. ETA my current attitude is what's the point? We weren't included in the Green book...
  17. M

    Well-known, famous people with ME/CFS (public thread)

    I've had the hard copy of Laura Hillenbrand's book for a few years now but just discovered it's on audiobook. Unbroken Audiobook | Free with trial
  18. M

    BAPEN publishes its Annual Malnutrition and Nutritional Care Survey Report 2023

    Probably should be read in conjunction with this Vitamin B12 or folate deficiency anaemia - Treatment - NHS I have an appointment with my GP on this next week.
  19. M

    Trial Report Home-based transcranial direct current stimulation treatment for major depressive disorder: a fully remote phase 2 randomized sham-controlled trial

    It's all about 'parity of esteem' don'tcha know and ECT Electroconvulsive therapy (ECT) - Mind The new shadow Secretary of Health and Social Care was speaking about 'parity of esteem' in parliament this afternoon and yes, yet again those words made it into Hansard. It's almost as if John...
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