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  1. Rain

    Sweden: termination of the contract for specialist medical care for ME in Stockholm, including the Bragée ME Center, 2023

    Thank you very much, @mango ! Really appreciate it. Seems to be similar to the B12 dosage/frequency many have used before them. De Meirleir was one, but he used a Hydroxocobalamine from a local Belgian brand (Sterop).
  2. Rain

    Sweden: termination of the contract for specialist medical care for ME in Stockholm, including the Bragée ME Center, 2023

    Saw the FB-link with their statement regarding B12 in another thread. Strange that they won’t link to the cancer risk reports they refer to when people ask for it in the comments… Do you know what type and what dosage B12 they used? @mango
  3. Rain

    Noise cancelling devices for sleep?

    The only ear plugs I am able to use is 3M 1100. They look similar but act differently than any other foam plugs I have tried, much less “pressure”. Sadly, 3M recently discontinued production of all air plugs, but it is still available. Hopefully, someone will buy the rights and take over the...
  4. Rain

    Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

    Have you been checked for Raynaud's?
  5. Rain

    Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

    It is well documented that Migraine benefits from vasoconstriction and gets worse with vasodilation. And with ME-symptoms preferring the opposite, having both can be a never ending circle.
  6. Rain

    Norway: Articles from TV2 about ME. Interviews with researchers as Fluge, Rekeland, Sommerfelt, Kielland and an interesting patient case

    It is also possible to read between the lines that she seems to have done Rituxumab a few years prior to the above list. Non-responder, but could it have been a factor in the later response?
  7. Rain

    Norway: Articles from TV2 about ME. Interviews with researchers as Fluge, Rekeland, Sommerfelt, Kielland and an interesting patient case

    Have a look at the pictures in the article - name of medications written in her palm.
  8. Rain

    Paper Spray Ionization Ion Mobility Mass Spectrometry of Sebum Classifies Biomarker Classes for the Diagnosis of Parkinson’s Disease, 2022, Sarkar

    There is a problem with a kind of fabric eating bugs in my area (not an exterminable kind, we have to just live with it). 99% of the clothes they have attacked in our home over the years have been mine. We have a running joke that my body scent must be a special delicacy for them, but have...
  9. Rain

    JK Rowling new book — chronic illness references

    I have not read that one. But one of the earlier books had a central plot where her message clearly was that “men in womens clothing” are dangerous (years before she started her twitter rants). The whole thing was rewritten, the TV series had none of it.
  10. Rain

    JK Rowling new book — chronic illness references

    House aired 2004-2012 and some things in the TV-industry have changed quite a bit since.
  11. Rain

    JK Rowling new book — chronic illness references

    I think the TV production much easier could have gotten away with keeping the BID community from an earlier book if they would have wanted. They left it out.
  12. Rain

    JK Rowling new book — chronic illness references

    100% agree. Here is an article about controversial content from earlier books. I think those you here who have only watched the series will agree that it was all left out/rewritten?
  13. Rain

    JK Rowling new book — chronic illness references

    I have read all the books the TV series is based on so far. The Tv series have left out all the controversial story lines (including a plot about trans people being dangerous, and one about an online community for BID). Pretty confident that this chronic illness part will be left out as well if...
  14. Rain

    [Poll] Experiences of PWME taking the contraceptive pill

    I have even changed gynos (and seen a internist) during the years of being on it, have not been met with any raised eyebrows. I’ve been advised to stay on it until we are certain that I have crossed menopause. But as norethisterone suppress FSH/LH, it is hard to say exactly when.
  15. Rain

    [Poll] Experiences of PWME taking the contraceptive pill

    I prefer 2,5mg norethisterone that also removes ovulation, not just periods. It is registered for short time use, but many endometriosis specialists use it long term. No side effect, but I do generally tolerate hormones well.
  16. Rain

    Why use Forget Me Not as a symbol for ME?

    A blue ribbon will always be the most neutral choice. But I have been «missing» from the lives of my loved ones for so long that my immediate thought was that I do really like this! I don’t have any previous cultural association with the flower, though. My least favorite symbol/association is...
  17. Rain

    Parkinson's actometers again

    Could someone please direct me towards a thread where this have been discussed earlier? Could not find anything via search. Thank you.
  18. Rain

    Clinical Trials Arena: Long Covid-19: drug trial results to watch in 2022

    Table with short overview at the bottom of the link. https://www.clinicaltrialsarena.com/analysis/long-covid-19-drug-trial-results-to-watch-in-2022/
  19. Rain

    Covid-19 vaccination experiences

    My question was if he had seen people getting general autoimmune activation/flare over time after the vaccines and/or any new (autoimmune) skin symptoms with that. His answer was yes in general and a lot of new skin reactions in particular. Here is a dermatologist on Twitter raising a question...
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