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  1. MerryB
    Post

    Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine, 2022, Systrom et al

    Ah I've been waiting for this study to be published. I was prescribed Pyridostigmine last year and didn't notice any of the side effects listed...
    Post by: MerryB, May 7, 2022 in forum: ME/CFS research
  2. MerryB
    Post

    Dilated peripheral veins

    Can't say for sure that it's the same as what I have but I have pots and I take medication to constrict my veins (Midodrine) which does help me...
    Post by: MerryB, Jun 5, 2020 in forum: Cardiovascular and exercise physiology (CPET)
  3. MerryB
    Post

    (UK) How much are disabled people who can't work expected to live on?

    I get approximately £113 a week ESA. The exact rates are on the gov.uk website. It's absolutely not enough to live on. I have to combine income...
    Post by: MerryB, Apr 16, 2020 in forum: General disability topics and advocacy
  4. MerryB
    Post

    Cambridge University makes their texts free online until end of May 2020

    No sorry I accidentally posted in the wrong thread - it was supposed to be a comment on the NHS report on improving clinical care in neurological...
    Post by: MerryB, Apr 2, 2020 in forum: ME/CFS research news
  5. MerryB
    Post

    Cambridge University makes their texts free online until end of May 2020

    I e-mailed the department that produced the report featured further down the web page to ask why they didn't mention ME in the report, considering...
    Post by: MerryB, Mar 19, 2020 in forum: ME/CFS research news
  6. MerryB
    Post

    Midodrine

    Oh thank you Ryan, I will check it out!
    Post by: MerryB, Mar 11, 2020 in forum: Orthostatic intolerance treatments
  7. MerryB
    Post

    Midodrine

    Hi @Ryan31337 Thank you very much for your reply, and interesting to hear that you also have very reliable 'viral' symptoms as part of your PEM....
    Post by: MerryB, Mar 8, 2020 in forum: Orthostatic intolerance treatments
  8. MerryB
    Thread

    Midodrine

    Hi everyone, I am wondering whether anybody who has viral onset (especially mononucleosis)ME and POTS had tried Midodrine, and if so whether you...
    Thread by: MerryB, Mar 8, 2020, 5 replies, in forum: Orthostatic intolerance treatments
  9. MerryB
    Post

    Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic I

    So according to this, people with ME who meets POTS criteria should be diagnosed as POTS plus, and those who don't meet POTS criteria but who have...
    Post by: MerryB, Mar 8, 2020 in forum: 'Conditions related to ME/CFS' news and research
  10. MerryB
    Post

    MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

    Thank you - I wasn't aware of this. This is good to know.
    Post by: MerryB, Mar 6, 2020 in forum: Advocacy Projects and Campaigns
  11. MerryB
    Post

    MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

    Thanks, that's good to know!
    Post by: MerryB, Mar 6, 2020 in forum: Advocacy Projects and Campaigns
  12. MerryB
    Post

    MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

    For medical education I would prefer charities put together, on collaboration with scientists and expert clinicians, a CPD accredited online...
    Post by: MerryB, Mar 5, 2020 in forum: Advocacy Projects and Campaigns
  13. MerryB
    Post

    From IBS to ME – The dysbiotic march hypothesis, 2020, Berstad

    Hmmm... this hypothesis doesn't seem to match my experience very well either. I didn't have an unusual amount of antibiotics growing up. The ME...
    Post by: MerryB, Mar 4, 2020 in forum: ME/CFS research
  14. MerryB
    Post

    ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with diagnostic criteria)

    Unpopular opinion but I actually prefer the term SEID over ME or ME/CFS. Because there is such a long history of stigma attached to the latter...
    Post by: MerryB, Mar 1, 2020 in forum: Diagnostic Criteria and Naming Discussions
  15. MerryB
    Post

    "Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia... van Campen et al, 2020

    Thanks! He used the term mitochondrial myopathy but it was a small sample size. 22 patients with a clinical diagnosis of mitochondrial myopathy,...
    Post by: MerryB, Feb 29, 2020 in forum: ME/CFS research
  16. MerryB
    Post

    "Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia... van Campen et al, 2020

    Thank you for the suggestion. If my current new medication trial doesn't help (Midodrine) then I will discuss this with GP. I found it interesting...
    Post by: MerryB, Feb 29, 2020 in forum: ME/CFS research
  17. MerryB
    Post

    "Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia... van Campen et al, 2020

    This is very interesting. When I crash my breathing changes - it is like big gasps followed by very fast and hard expirations. Like someone would...
    Post by: MerryB, Feb 28, 2020 in forum: ME/CFS research
  18. MerryB
    Post

    Cold kneecap?

    I don't know whether this is the same as what you are getting, but when I go out in my wheelchair in the winter my kneecaps can get very cold...
    Post by: MerryB, Feb 24, 2020 in forum: General and other signs and symptoms
  19. MerryB
    Post

    Anyone have trouble writing by hand?

    I feel your pain, as a fellow lefty.
    Post by: MerryB, Feb 23, 2020 in forum: Home adaptations, mobility and personal care
  20. MerryB
    Post

    Anyone have trouble writing by hand?

    Yes, I used to struggle with both pen grip and writing the letters in the wrong order due to cognitive problems. I'm not dyslexic - this problem...
    Post by: MerryB, Feb 23, 2020 in forum: Home adaptations, mobility and personal care
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