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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. free at last

    Parents of two children with ME take their lives and then commit suicide

    My god when will the suffering and neglect ever come to a end. Such devastating news Those that have helped slow down biological research. Need to see what its done to people. Shame on so many.
  2. free at last

    'Betwixt and between' Liminality in recovery stories from people with Myalgic Encephalitis

    A good long term remission can feel like recovery. But its not total. But if the illness was initially quite strong. And lasted for a long period, then that type of improvement can feel like a cure in comparison. But again I don't think it is, in most cased. But it can be profound. Especially...
  3. free at last

    Landmark et al: CFS and experience with the Lightning Process

    don't know about you, but I would be out of there quicker than lightning. didn't take me two secs to process that
  4. free at last

    Illness progression in chronic fatigue syndrome: a shifting immune baseline

    Hi Justy Its this kind, of washing of hands, of a illness they don't understand. And do not have the expertise to make any meaningful headway with. should require a apology. When the science catches up. And finally leaves those in the NHS, that leave patients to get on with it, with egg on...
  5. free at last

    Survey on the Name and Criteria for ME or CFS

    I have just done it, but it was hard to answer the questions
  6. free at last

    High blood pressure with me/cfs?

    Hi countrygirl Have you started any BP meds. That is a very high reading. My doc has started me on Ramipril. And my reading is much lower than that. Don't like theses meds, side effects can be horrible. Especially when they mimic all the symptoms I originally went to the doc about.
  7. free at last

    High blood pressure with me/cfs?

    Saw this thread. And it seemed a good place to share. was first diagnosed with ME around 1995. Never had high BP as far as I was aware, Recently developed ice pick type headaches on the top back and in both temples of my head. Also Both eyes ach off and on ( started on the right eye which is...
  8. free at last

    Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins:

    Hi Again Cigana, I have reason to believe, the initial attacks, were not a normal flu. I had so many episodes, that no one in my family ever caught. This seems extremely unlikely to me. I feel sure it is likely if the initial attacks were some kind of normal Flu, some one in my family...
  9. free at last

    Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins:

    Hi Cigana I have no doubt avoiding things that can worsen a condition will bring about improvement. Sometimes dramatic ones, especially if the problem is severe. As mold could be in different circumstances. places of habitat. Healthy people likely do not respond to Mold in the same way as ill...
  10. free at last

    Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins:

    I personally think mold just adds to the problems, so is worth minimizing. But I don't see it as a cause, or sustaining the illness. If it was as simple as that. there would be a lot more people cured by now. But anything that aggravates the condition, is worth helping.
  11. free at last

    Mother of ME child labelled with Munchausen's until she studied medicine

    I am afraid with that other stuff on there, there will be a lot of distancing from this. You cant have two things that generate disbelief on the same page. You would be surprised how pre conceived learning, can lead to blind judgmental approach to many things in life. Without ultimate proof...
  12. free at last

    Some doctors have deep contempt for patients

    Without evidence, I mean evidence that can not be disputed. This is one prejudice, that will always simmer away in many places. I live for the day, of that hard evidence, that is overwhelming. So doctors, and people. sometimes even family. Finally know what we all went through. When we start...
  13. free at last

    when is recovery actually recovery

    Thanks for the replies and thoughts everyone pretty much agree with everything that's been said. Just seems a case of enjoying life as best we can at all our different levels, And hoping further breakthroughs happen, as the problem with remissions are they can relapse into worsening illness once...
  14. free at last

    Done reading PLAGUE by Dr. Judy Mikovits

    Yeah cheers Bob. it has to be above board. I am just getting paranoid I think. its easy to with this illness, and all the vested interests and the like. But I think he is trustworthy
  15. free at last

    Done reading PLAGUE by Dr. Judy Mikovits

    I know one thing, as for the idea of a retro virus, not being symptomatic with everyone. I got ill with clear viral symptoms. again and again. Not one in my family ever followed suit, that always bugged me. Why they never had this damm flu. a flu that I couldn't get rid of. that just seemed to...
  16. free at last

    when is recovery actually recovery

    Hi Wayne cheers for the links I will have a look, I dont want surgery to be honest. But it has been really bad in the past, it was getting a joke I was in hospital with it three times, And seems quite sever, I don't think its something I am going to cure without surgery though I could be wrong...
  17. free at last

    when is recovery actually recovery

    something I have been thinking a lot about, when is recovery really recovery. When my illness first started it was like hell on earth. Like some kind of viral attack immune dysfunction. sleep disturbance, allergy effect nightmare that went on for months at a time with barely days between...
  18. free at last

    UK: The Wright Stuff 19th March - Does M.E. still carry a stigma?

    Mathew Wright seems genuinely wanting to help. But uncertain about the full extent of the illness. He strikes me like he knows someone close with the condition, and wants fair play. Just a observation, for what its worth. I like him, he seems very sincere, and interested in helping. Its good to...
  19. free at last

    New era for ME/CFS research as top cytokine study attracts media headlines

    Interesting. I have never figured all this out. Though this paper seems to suggest much that seems to fit. Even as far back as 1995 Professor Leslie Findley (neurologist) at Harold wood hospital muttered Cytokines to he/s colleague, When I described what was happening to me. Clever man. Looking...
  20. free at last

    Are my problems ME/CFS related? So very very scared its all over for me

    Not sure that is different versions of the same thing ? Like the aches some one might get with ebola for example. Virus aches. Not just aching ? I didn't really mean chest discomfort, I mean the kind of respiratory chest symptoms one can get that leads to infections like pneumonia. I had a...
  21. free at last

    Are my problems ME/CFS related? So very very scared its all over for me

    Have to agree both sound primarily like extreme anxiety, panic, or nervous disorders. You can get this with ME/CFS I did. Big difference though is why. When I had these anxiety symptoms first start, I had temperatures of up to 104. The kind of flu like attack that, would likely put me...
  22. free at last

    New era for ME/CFS research as top cytokine study attracts media headlines

    The hit and run idea, is a good one, But certain things for me seem to stick out like a sore thumb. Not so much hit and run. More like Hit run, and come back again. 1 I had numerous Viral Flu like attacks that occurred over this three to five year period. At first, classic flu symptoms, With...
  23. free at last

    Brooke now very sick and reported to be in the last terminal stages.

    Its so sad. When is the health community in this country going to learn. That so much suffering is happening out there. While they argue, about real or unreal physical illness. Brooke sounds so brave. Only those who have really suffered, might understand what poor Brooke must be going through...
  24. free at last

    My Chronic Fatigue Recovery Story

    Its weird reading her story. she talks of crashes. But her crashes are my good days after 19 years.:( She did not have what I had. Either I didn't have CFS or she didn't Its weird how this dustbin diagnosis. leaves many of us with completely different illnesses And all be badged with the same...
  25. free at last

    My Chronic Fatigue Recovery Story

    Well I partly recovered. But it was a long hard slog. and I am still not totally recovered after 19 years. Though I suspect I am doing a lot better than many here. Even though I am on two powerful anti biotics as I speak ,due to a resurgence of abscess infections, don't ask where. I have...
  26. free at last

    First hint of 'life after death'

    Well that's completely fair. But of course we do have to be careful not to believe just one study, over another. And this can go both ways. But of course the sensible thing to do with no bias. Is to look at all the studies and take the common view, that most experts of ALL the studies seem to...
  27. free at last

    First hint of 'life after death'

    Thread goes silent, I go away for few days, I look back and there's, enough reading for about a week.:eek: Trust the scientists to get picky about, EEGs showing no activity after Cardiac arrest.. Ive skimped a little on some of the links, but there appears to be quite a few links mentioning...
  28. free at last

    First hint of 'life after death'

    Ok here my statements are highlighted. while 2% described awareness with explicit recall of ‘seeing’ and ‘hearing’ actual events related to their resuscitation. One had a verifiable period of conscious awareness during which time cerebral function was not expected. Although the etiology of...
  29. free at last

    First hint of 'life after death'

    No I understood Lou. We all just want fair respect for our views. That's all. Un popular science, or belief, does make some uncomfortable. Its the way of the world. But also remember the compassion and help. All do on here. We could be completely wrong. We all have to concede its possible
  30. free at last

    First hint of 'life after death'

    is At last some interesting questions Barb. I think in the case I talk about, the one where he seemed to accurately recall events for up to three mins with little or no heart beat. the researcher's said this while 2% described awareness with explicit recall of ‘seeing’ and ‘hearing’ actual...