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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. R

    ACTION ALERT: ME/CFS on "Last Week Tonight with John Oliver"

    the show has both a fb account and a twitter feed I believe they are @IamJohnOliver and @lastweektonight. the campaign to get their attention has already begun and there are a number of tweets and wall comments already.
  2. R

    Next CFSAC Meeting - August 18th & 19th, 2015

    did anyone manage to submit a comment?
  3. R

    Next CFSAC Meeting - August 18th & 19th, 2015

    such a small window, I wonder if they actually want to hear from us?
  4. R

    what is the purpose of methylation support?

    when recent research tells us that much dna in cfs patients is in fact overmethylated? thanks.
  5. R

    An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

    yes, this should be just fine, we really want the public to see the extent of our disability. a "lie-in" would be okay, or a "funeral-in" as the AIDS patients did, as severe ME is a kind of living death. hm I remember saying this previously on this thread, but it didn't seem to get much...
  6. R

    Anonymous begin campaign to free Karina Hansen

    yeah, keeping ME patients in psych wards is hugely unproductive. it saddens me to hear of these practices in europe, tho likely it's happening in north america too and we're just not getting the reporting. wish there was something I could do but I don't have any money, only time.
  7. R

    An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

    I want the really sick people there. I'm willing to arrange transport. I want people to be offended and disgusted and shocked and outraged. I want to make it so that they can't ignore us anymore. I'm happy to illegally occupy a parkspace. should the cops try anything, it'll look real good...
  8. R

    why the hell do chronic fatigue specialists charge so much?

    that is morally reprehensible. if we could only get the word out then I know that public outrage would be on our side. [This] is very bad for those of us who are permanently disabled. just like the gays made aids into a political issue, so will we if we expect anything to get done.
  9. R

    An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

    yes, I believe this calls for some street theater.
  10. R

    An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

    the gays were not afraid to offend sensibilities, what with funeral-ins and such. I think this is a fabulous approach. we should have sleep-ins, half dead patients on cots with IVs, unmoving. this would demonstrated the severity of the illness, giving much-needed visibility. less severely...
  11. R

    why the hell do chronic fatigue specialists charge so much?

    obamacare requires that you buy your own insurance. and not even medicare is free anymore. it's one of those cruel ironies where if you're poor enough to be on it, you're also too poor to afford the copays, even the premiums. have seriously considered forgoing it altogher, because $100 a month...
  12. R

    why the hell do chronic fatigue specialists charge so much?

    wasn't aware that 17-year-olds were expected to fund their own health insurance. but thanks for reminding me of how stupid and personally irresponsible I am.
  13. R

    why the hell do chronic fatigue specialists charge so much?

    you forget that medical care is for rich people.
  14. R

    why the hell do chronic fatigue specialists charge so much?

    I wonder if this is grounds for a class action lawsuit. I'm serious. probably the cdc, but maybe the medical schools.
  15. R

    why the hell do chronic fatigue specialists charge so much?

    actually I would argue that the trends of globalization and environmental degradation are what's driving the paradigm shift. I mean, I got ME at age 18. and I'm not the only one. I guess I wouldn't be annoyed at specialists charging so much if so many docs weren't so stupid and arrogant. I'm...
  16. R

    why the hell do chronic fatigue specialists charge so much?

    no kidding. there are a lot of problems with our medical system, and this is a very good point indeed. esp as knowledge becomes more and more decentralized there ought to be easier and cheaper ways to obtain credentials. actually I have very casuallly considered the possibility attending med...
  17. R

    why the hell do chronic fatigue specialists charge so much?

    I'm disturbed by the coupling of $$ and medicine. surely very disabled people are going to also be the least likely to pay for their treatment? someone is going to say, "because they can", but before you say that, I'm just going to mention, "I know", and also: "that doesn't make it right".
  18. R

    dealing with selfish parents and the little child I'm still at 40+ (rant)

    My parents are equally narcissistic; they expect me to entertain them and take care of their feelings but are upset when this conflicts with my work schedule. I became ill as a teenager, and I would probably be well by now had they let me come live at home for a few years and eat right for...
  19. R

    is hunting down a job even worth it?

    I think the reality of most workplaces is that they do not care about you. The most important thing is the bottom line.
  20. R

    is hunting down a job even worth it?

    That is what I am worried about. I would love to work, but I am seen as lazy and unmotivated. I'm okay in certain jobs, but in others, but a lot of my bosses have not liked me, for one reason or another. Cfs seems to bring out the worst in people.
  21. R

    is hunting down a job even worth it?

    I'm unemployed right now; I wish I could work. I think I am too ill. I keep getting fired for work performance issues. Yes, I do need the money! I worry that if I do not work now, I could have a hard time finding a job in the future. There are a lot of seasonal jobs where I live, and I...
  22. R

    is hunting down a job even worth it?

    I keep getting fired. I feel like there are plenty of people out there who can do the job way better than I. Why should anyone hire me?