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  1. Melanie

    'Unrest' Film on PBS Soon

    @Andy Do you have a Twitter account? Could you ping either @JenBrea or @UnrestFilm and ask if the UK DVD's have English subtitles? We figure they do but @Arnie Pye wants to be certain.
  2. Melanie

    'Unrest' Film on PBS Soon

    Are you on Twitter? You can ping @JenBrea or @UnrestFilm.
  3. Melanie

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    I couldn't read all you posted so I will just add to what you summarized above. A flare of some or all of an individual’s symptoms which includes but is not limited to fatigue, with an immediate or delayed onset of 24-72 hrs and with prolonged recovery which can take 1 day to 2 weeks...
  4. Melanie

    'Unrest' Film on PBS Soon

    It won't even be on in my area as there are two PBS channels and I don't get the one it will be broadcast on. So I rented it through VIMEO and you can view it on the 9th on the 'Independent Lens' site. http://www.pbs.org/independentlens/watch-video/
  5. Melanie

    'Unrest' Film on PBS Soon

    The only workaround to this for people that won't be getting the broadcast is the 'Independent Lens' site but it might be blocked in your country. Although showing in the US, it will not be broadcast for my area's PBS channel only a SPECIFIC PBS channel that not everyone in my state gets. And I...
  6. Melanie

    East Coast Doctors

    If either is one of the handful treating with Ampligen (only 100 patients in the US are allowed to be treated at any given time per the FDA and all out of pocket and I think there is a waiting list) or with specific antivirals, then either would probably be a good choice. Nancy Klimas will at...
  7. Melanie

    Public Who shall we nominate for the 2018 CNN Hero Award?

    By the way, I did nominate someone in the ME/CFS community in 2016 but they were not selected and I fault myself. My writing skills are seriously lacking. They like a nice bio of the person and their work over several years but with simple personal writing skills, in your own words, and not...
  8. Melanie

    Public Who shall we nominate for the 2018 CNN Hero Award?

    Although I would love for it to be Alem, his health is the issue and of course whether he wants this or not. I think David Tuller or Jen Brea could be his voice. However, I think Jen has the education, patient experience, an award-winning documentary, and looks that appeal to a wide audience...
  9. Melanie

    Public Who shall we nominate for the 2018 CNN Hero Award?

    I think it should be Alem. He is very ill but I also think that speaks volumes and perhaps David Tuller or Jen Brea could be his voice. Or both. David is working on PACE and Jen has the patient experience and a documentary and looks that are appeling to an audience. (We can't rule out what a...
  10. Melanie

    Study to Investigate the Efficacy and Safety of Ferric Carboxymaltose in Iron-Deficient Patients with Fibromyalgia, 2017, Boomershine et al

    My Ferritin Iron levels are low while my overall iron is high which is very abnormal but not unheard of. Low Ferritin has been associated with RLS which I have. This was the only iron measured initially by a sleep doctor and he mentioned iron infusion and had me take Ferritin supplements. I...
  11. Melanie

    Researcher Interactions Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread

    Will his research on brain scans be replicated/expanded? Although Japan and possibly one other group also did brain scans, I believe his work should be expanded and not only include healthy controls but cohorts such as MS, Lyme, ALS, Parkinson, Autism, GWI, EDS, and patients suffering from...
  12. Melanie

    'Unrest' Documentary on DVD/Blu-ray and Digital

    You can purchase 'Unrest' on DVD and Blu-ray. https://shop.unrest.film/collections/dvds-blu-rays Rent or purchase digital. https://shop.unrest.film/pages/digital And remember, PBS's Independent Lens will broadcast 'Unrest' Monday, January 8th at 10 PM EST/9 PM CNT...
  13. Melanie

    'Unrest' Film on PBS Soon

    I will post this to the information above. Thanks!
  14. Melanie

    'Unrest' Film on PBS Soon

    I hope so. I was wondering how other countries were going to be able to view.
  15. Melanie

    'Unrest' Film on PBS Soon

    Unrest Film by Jen Brea will be broadcast Monday, January 8th on PBS’s ‘Independent Lens’ at 10 PM EST/9 PM CNT. This film is about Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). Don't forget to let friends and family know Wednesday or Thursday prior to the Monday broadcast. I am going...
  16. Melanie

    Acute and chronic sinusitis

    Interesing. I have some mild to modest reactions to mold, different trees and grasses. So they think this is why I have sinus issues.
  17. Melanie

    Acute and chronic sinusitis

    I had an MRI and it was clear which is infuriating. I constantly feel inflamed and I swear I can smell infection and my ENT can see some redness of sinuses and signs of post nasal drip. I go through uncontrollable sneezing once or twice a month and have an Rx nasal spray for that (can't...
  18. Melanie

    Article: “I was ready to give up on my life with ME ... but Perrin treatment miraculously changed everything”

    Just another reason why we can't get through to people how sick we are and that nothing works and there are a lot of dangerous therapies for ME/CFS out there including GET/CBT and Lightning Process.
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