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  1. Seven

    Cochrane ME/CFS GET review temporarily withdrawn

    Here is the thing, if you analyze this whole thing, it all goes around the same one person if not 3 tops, so we need to point that out, and zero out on the real culprits of this debacle, the rest are just puppets, we need the puppeteer down.
  2. Seven

    “Chronic fatigue syndrome - the 'missing people' enigma” - Australian news article

    please click to give traffic to good reporters so they do more articles pls!
  3. Seven

    He Got Schizophrenia. He Got Cancer. And Then He Got Cured.

    I am one of those that get remissions with viruses/ colds. But I revert back to Cfs once infection is gone. I had Zica twice ( not sure how that is possible) and got remissions and felt the momment i switch back. Same w colds, I can tell inmidiately when virus is suppressed, I get that Cfs brain...
  4. Seven

    OI is getting worse - what meds can help ?

    Can you ask for a referral to an electrophysiologist (they treat OI).
  5. Seven

    'Shaking and trembling with ME/CFS' - Chronically Hopeful

    Check your electrolytes, when you get the shake means you have over done it and might be imbalance on electrolytes (is my case anyways)
  6. Seven

    OI is getting worse - what meds can help ?

    There are tones of drugs and the type will depend on your symptoms (high or low BP) you have vasoconstrictions drugs (or vasodilators for those who need it), florinef (volume add meds), beta blockers (for high heart rate), Calcium channel blockers, Ivabridine,.... Takes a bit to get the right...
  7. Seven

    David Tuller: Trial By Error: The BPS Brigades Score Another Own Goal

    OMG this is perfect for a goo illustration of the resicouless of it all!!! Sympson gets CFS and get GET and CBT!!!!
  8. Seven

    Discussion - Does ME involve brain inflammation?

    I am on a good Cfs stage where I am mostly in remission must of the time and what I can tell is when I feel inflamed. Cannot tell you what it is, but I even get bumps in the head. Ussually on the top left or right. One time I had it on the forehead pretty obvious. Some plp tell me my face swells...
  9. Seven

    CNN: Escape from the Mayo Clinic: Parents break teen out of world-famous hospital

    This happens a lot on ME also, and some other brain disorders. Like what is common in this people where they get retained. Are they testing drugs on them, or do they have something unique?? Like we need to dig why they get retained, what makes them different.
  10. Seven

    CNN: Escape from the Mayo Clinic: Parents break teen out of world-famous hospital

    But why the ME patient? I just wonder if we need to dig deeper and find a commonality. Are this plp being used to test something, what makes them target?
  11. Seven

    Member comments wanted: Third section (What the guideline will cover) of the NICE ME/CFS guidelines draft scope

    Since the CDC updated the website, can it be used here a reference??? Just a thought.
  12. Seven

    CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

    I forgot who here was that can write / publish papers, but can we like detail the workwell foundation study and recommend as test for CFS/ME??? I think we need replication or more literature so other sites will accept this as acceptable testing. So we can move forward and have at least this we...
  13. Seven

    Are ME/CFS Patient Organizations “Militant”?, 2018, Blease and Geraghty

    this should be in his tweeter :). If we call on plp in private we don't gain much.
  14. Seven

    Updates on status of ICD-11 and changes to other classification and terminology systems

    I am sorry for being thick but can you give me a summary as if I am a 2y old. So they have CFS under bodily distress syndrome? where is ME under?
  15. Seven

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

    You are right, I had bone crushing fatigue at first, now 12y in not so much (except certain times of the day) but I do not have more energy at all, My PEM is as bad if not worst than when I used to be so tired, and the health issues get more serious with time, like at first was some symptoms and...
  16. Seven

    Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with CFS/ME, 2018, Broadbent et al

    Something interesting I just remember, before I got sick sick ( so I was gradual onset and before I knew I had Cfs) I remember going to gym and I could not raise my HR over 120, I remember the target for me was 145bpm and I would run and try to achieve fat burning zone and was not able to.
  17. Seven

    Updates on status of ICD-11 and changes to other classification and terminology systems

    So what happened with ME and cfs in the new classification?
  18. Seven

    Michael Sharpe skewered by @JohntheJack on Twitter

    Something interesting in my book= When the patients were “Crazy militants” they paid articles and the news papers, did the dirty work. For each bad article ME community had about PACE, 5 “good” would come out! They were on top Of it( as if they paid or had friends in line for this crap). But...
  19. Seven

    Michael Sharpe skewered by @JohntheJack on Twitter

    Or MAYBEEeeeeeee they are working for the dwp ( whatever your insurance for government is)?
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