• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. L

    SIGNforMECFS to make the German Bundestag aware of the desperate situation of the many ME/CFS sufferes

    Bump! 34868 signatures, 4 days till deadline. 50000 needed. Please sign!
  2. L

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Thank you for you post @Avenger, very helpful. You're diet is fish, eggs, meat. Can you also take supplements? Or do you have to be cautious with that? Can you take carnitine e.g?
  3. L

    LDN side effects other than insomnia?

    I would appreciate to hear more experiences with LDN. I started three weeks ago and after some rough nights thought to have some benefits from it. Started with 0,5 mg and ended with 1,5 mg. But side effects were too much, very tired, teary, black around the eyes, depressed. I decided to stop...
  4. L

    Anorexia may be caused by bacterial infection, BPS model questioned

    http://www.medical-hypotheses.com/article/S0306-9877(15)00465-X/pdf
  5. L

    If you had a few spare bucks, what would you buy to ease your condition?

    Bed coach kitchen
  6. L

    Question for former athletes/fitness rats

    I danced a lot, even got a danceclass for teenagers. Loved walking, cycling and sailing. But running I could not do. And after dancing I slept very badly and was hangoverish the next day... Other kinds of sports I could not do, in the gym I got a very red head and asthma. But like justy, I...
  7. L

    NIH post-infectious CFS study

    I still think the venom is also in the multiple use of the term "brain dysfunction" in the protocol instead of "brain pathology". As if the only problem is wrong functioning of the brain, and the solution is let the brain function normal. Instead of examining the brain pathology (eg chronic...
  8. L

    NIH intramural research program update

    I am sorry, but I have the feeling that the proposed research is only touching the surface and misses the real nature of ME. I may be wrong, and my worries may be caused by language problems and lack of medical knowledge. For example I would have liked to see a bigger focus on the immune system...
  9. L

    CBT for bipolar: Keith Laws challenges NICE and inadequate meta-analyses

    I think the main error may be the inclusion bias. Only people who share the beliefs with the researchers and who are not too ill will go forward with this therapies. And will of course report benefit. Those who are too ill or too critical will not take part in this kind of studies. You can apply...
  10. L

    What do you guys mean by Alcohol intolerance please?

    http://onlinelibrary.wiley.com/doi/10.1002/acr.22604/full and http://www.webmd.com/fibromyalgia/news/20150730/study-finds-drinking-may-ease-fibromyalgia-pain-but-doctors-wary Conclusion is that moderately drinkers have less complains. I wonder if they have accounted for the fact that people...
  11. L

    Strep Throat triggers identical CFS impairments

    http://www.translational-medicine.com/content/4/1/34 Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data
  12. L

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

    Well, I have read something else. This anxious person was a very lazy, lethargic boy, as he described himself. A young boy, since he is now in the first part of his twenties. And he took hydrocortisone for andrenal issues. And went to an aging-specialist for medicines. I do not think this...
  13. L

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

    Well, to state that some people's experiences, that is the agitated state before gettting ill, is not ME because it fits Gupta's musings, is illogical too. What I see now, is that there are several PWME who has experienced this state of arousal, before or during illness. It is worthh the...
  14. L

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

    The hypersensitivity to sensory stimuli is well described, as is the anxiety. But not so the agitation. There are more people describing a high state of arousal before getting really ill (so the doctors can say it is due to overstressing themselves instead of recognising this as a early...
  15. L

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

    At the beginning of my illness I had also a period with lasting agitation and anxiety, combined with intestinal problems. It was after I took antibiotics. It was no good place to be. I was very lucky that it lasted only for two months, then it was over. I am very sorry to hear you are feeling so...
  16. L

    Hornig/Lipkin cytokine study: Foreign language coverage

    And! From! The! Netherlands!.....: ....nothing..... (neither about the IOM rapport).
  17. L

    Chlorella allergy?

    I am very sure I am allergic to chlorella, it causes me directly heavy vomiting, which I normale don't have, and malaise. My body seems to want to get rid of it asap. I wrote about this on another forum, but no one else had the same. After two times I quit taking chlorella. The same thing...
  18. L

    Poll: Suicide - as many as one in five CFS patients kill themselves

    I think about it, but not in a vague way. But I do not have a plan. I don't like the sound of "vague", it is used (in my language, that is) to descripe out multiple symptoms, which are, as we know, not vague at all. Can it not be altered in "I think/I have thought about it but do not have a...
  19. L

    How do you pronounce SEID ? (Poll)

    Sad...
  20. L

    Critterina's Histamine Intolerance Journal

    Hello critterina, you mentioned a bad reaction on shampoo. I have also scalpproblems after washing my hair, with colds, slight breathing problems, heart bouncing. I think this might be an allergic reaction? Do you have any advice concerning the shampoo's to avoid or try? Thank you.
  21. L

    Depression Poll

    Hello hip, I try to sent you a personal post about above but did not figure out yet how...
  22. L

    Depression Poll

    O yes, this ís happening..... There are known cases in Denmark, Germany, of imprisonment in psychiatric wards of children with ME (the "starving" part I have heard of, indeed). The press will do nothing, too afraid to go against establishment. He Gary, Nice story. (Do you happen to know of...
  23. L

    Depression Poll

    Thanks Valentijn, this is the kind of respons I would have like to give if I was capable to. Indeed psychiatry has wronged us in a serious way, and is stil doing so.... but maybe the situation in the US is better in that aspect? I do think that most people working in this field do this with...
  24. L

    Depression Poll

    I must say, I am not so sure about all this distinction-making and labelling. There is not enough known about the pathofysiology of ME ánd depression, but in both cases braininflammation is thought to be present. I think confusing the two is as dangerous as forcely wanting to separate the two...
  25. L

    Depression Poll

    Back on topic, when I have a PENE I can be really very very depressed, almost suïcidal and desperate. It is for me directly linked with the neuro-immune exhaustion. And it can improve relatively quickly with rest, that is, it takes some days, but mostly not weeks or months like other forms of...
  26. L

    Depression Poll

    Hello Kati, I am sorry, I missed your post before. Thank you for your welcome and kind words. As you can tell English is not my native language, so I am a regular reader on PR, but not an active writer.... I think I should have said that I am vulnurable to depression, not sensitive... Well...
  27. L

    Depression Poll

    I think my sensibility for depression is a symptom of ME. It can be influenced for the better by rest and a save environment. But now circumstances are bad... dealing with ignorant docters, losing my home (where should I live?), worried about my child.... So very depressed at the moment, and...
  28. L

    Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia

    So I am curious whether this theory also explains my sudden onset allergies....