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    Does anyone else get a runny nose, sneezing, coughing etc during PEM?

    Yes. I get green goop coming out of my nose. Lots of tissues needed.
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    UK House of Lords/ House of Commons - relevant people and questions

    I really don't know why anybody bothers to ask questions in the House of Commons/Lords when all they get in response is always a totally duplicitous answer. He says most people in receipt of PIP will still continue to get PIP. Well yes, technically that is correct, but they will get half the...
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    Who is Simon Wessely?

    I imagine Wessley's colleagues must be absolutely sickened by this. So many awards for achieving precisely zero in his entire career. Yet those who get down to the work and actually help patients, go unrecognised. It is the same in every walk of life, not just medicine. The honours system is so...
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    "Emergency departments aren’t trained for Long COVID — and patients are paying the price" (The Sick Times)

    I had to attend A&E with my partner who was in excruciating pain with a migraine that had him screaming on the floor. He usually has to be injected with morphine at that point. No ambulance would come out, so despite having severe ME, I had to crawl to my car, drive him to the hospital, and then...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Just wrote to my MP to object to the PIP reforms. I have had severe ME for 25 years. No other benefits just a tiny occupational pension. Mostly bedridden. I checked my PIP award letter. I will be one of those who will lose their PIP as I did not score 4 or more in any category. I asked my MP if...
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    Protocol Impact of Tai Chi Therapy on Fatigue and Cognitive Function in Individuals With Chronic Fatigue Syndrome: Protocol for a Pilot... 2025 Wang et al

    Absolutely. I was told to try Tai Chi 20 years ago. I discovered it is absolutely impossible to do with OI.
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    UK: PIP appeals - advice, recommendations?

    It was always my understanding that a claimant had to be able to do the activity "reliably" and in a reasonable amount of time. Given that ME is a fluctuating condition, I would always just tick the box that says you can't do the activity at all. I have never met anybody with any condition who...
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    How to read while lying completely flat?

    Yes. I find they are better then drugs for falling asleep to. Of course it is a bit disconcerting when you nod off and then wake up to discover a new character has been introduced who you have never heard of. The other night I woke up to hear that "Billy had fallen into a pond. No idea who...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Do you know what ME is logged under? Is it logged under neurological conditions or psychiatric conditions? Many years ago when I was awarded an occupational pension by the Civil Service, my retirement was coded under "depression". I pointed out that I had never had even a day of depression, and...
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    Trial Report Effects of an 8-week high-dose vitamin D supplementation on fatigue and neuropsychiatric manifestations in [long COVID]: [RCT], 2024, Charoenporn+

    Endless research about the benefits of Vitamin D. Am I the only person who can't take this stuff? After 3 days of even a low dose I develop terrible brain fog.
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    Duvets - what fillings are worth a try, and which brands and retail are good (eg for being able to send back)

    Sorry for the delayed reply. I was dealing with my husband's stalker. Very stressful. I bought a Jasmine silk duvet from Amazon. I can't remember why I chose that one. Probably just because it was on Amazon and I was too tired to do any research !
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    Duvets - what fillings are worth a try, and which brands and retail are good (eg for being able to send back)

    I've tried a silk duvet. During my menopause I was on an endless search for the holy grail of duvets. I tried wool, but still had night sweats. In the end I bought a silk one. It was by far the best for regulating my temperature at night. In the winter I use two. They weren't much more...
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    Shingles vaccines, chickenpox, Shingrix

    If you Google shingles on shoulder, I think you will find some photos of it in that location. I had it on my head. I had no idea you could get it there either! Hope you feel better soon. I felt a bit unwell for a couple of weeks. Blisters lasted about a month.
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    Poll: To what extent are you (PwME) still shielding from Covid?

    I understand what you mean. I have had Covid definitely 3 times. Possibly 4. I am not saying it is a pleasant experience (it isn't!), but I have noticed a definite improvement in my ME since my last bout of covid in July. I am unvaccinated though. I didn't take any vaccines because I caught...
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    Poll: In pwME that report worsened sleep following exertion/excessive activity (or during PEM) what happens to your sleep during an acute infection?

    I usually feel all round much better when I am ill. I got the very first version of Covid and actually felt fantastic and super energised, even though I had a fever and a host of other symptoms. I have not had the same response to subsequent doses of Covid. Though I always sleep better.
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    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    I have found that my cognitive symptoms deteriorate more with emotional or sensory exertion. Whereas, my pain levels increase more if I have physical exertion. I am currently dealing with the police a lot, as my husband has acquired a female stalker. I am not exerting myself physically at all...
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    UK: Daily Mail: Half of women fear the NHS treats their health as a 'second-class issue'

    Having recently seen my mother in law on a hospital ward full of very elderly people, I think the elderly of both sexes probably win the prize for being treated terrriibly by medical staff. I even had to have a row with a discharge nurse who was accusing her of bed blocking. I could see she was...
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    UK: BMJ article: Severe mental illness: 120 people die in England every day from preventable conditions, psychiatrists warn

    My schizophrenic cousin was one of these people. He had taken to drinking very heavily as it seemed to block out the voices in his head far better than any medication. He never went to the doctor for anything. I think a lot of mentally ill people avoid the medical profession as much as...
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    UK Guardian: ME left me bed bound for nearly five years. A potted plant helped me rebuild my life

    I read the article in the Guardian. I didn't find it that insulting as the poor woman has clearly been extremely ill and isn't really "recovered" in any meaningful sense of the word. She just got a plant and it gave her a reason to keep going in life. I think the world is divided into 2 types...
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    Maeve Boothby O'Neill - articles about her life, death and inquest

    It was a survey I saw somewhere last week. Sadly my brain is so useless, I can't remember where. I will probably remember in about a weeks time, in the middle of the night!
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