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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. T

    Spain trying to execute pet dog of Nurse with ebola

    It is exactly what I thought. Among the 300,000 who set up and supported the petition to save that dog, how many set up a petition to provide help to the African victims of that disease? How many of them fought in the streets against the police, like they did for the dog? None. It speaks...
  2. T

    First Ebola patient in the U.S.

    Experts from around the world also said at some stage that multiple sclerosis was hysteria and that CFS was caused by deconditioning... It is not because I add a word of caution about what experts speculate about that I believe in conspiracy theories. There is a whole spectrum of opinions...
  3. T

    First Ebola patient in the U.S.

    No need to be aggressive. For a very long time, it was believed that viruses would not cross species because it was highly "improbable". In reality it did. A good example is HIV that mutated from a virus affecting monkeys only. When a virus replicates a lot (ie. when it affects a large number...
  4. T

    First Ebola patient in the U.S.

    "It has never happened" or "it has never been observed"?
  5. T

    First Ebola patient in the U.S.

    And now the nurse who treated the (now dead) Spanish priest in a Spanish hospital is infected... http://www.theguardian.com/world/2014/oct/07/ebola-crisis-substandard-equipment-nurse-positive-spain What a mess! [EDIT] duplicate info - I posted this just a couple of seconds after the previous...
  6. T

    Poll>>>Has anyone had success with graded exercise?

    As far as I know, Myalgic Encephalomyelitis was officially listed by the WHO in 1969 after Dr Ramsay's suggestion. Interestingly enough, Dr Ramsay initially used the term "Benign Myalgic Encephalomyelitis". But after seeing more and more patients and how ill they were, he removed the term...
  7. T

    "Why I [Ezekiel Emanuel] Hope to Die at 75"

    And the typical problem with people who hold opposite views to "Zeke's" (sic) is that they most often think these views are right for other people and other people's loved ones. I had an aunt who was diagnosed with terminal cancer and when she refused treatment she was bullied by doctors and...
  8. T

    "Why I [Ezekiel Emanuel] Hope to Die at 75"

    Personally, I quite like his point of view. He does not force it on anyone, and what he really talks about is quality of life. Extending life with zero quality is the medical approach followed today everywhere in the world. This is exactly what is done to ME sufferers. No quality of life? Who...
  9. T

    Family planning when you are young and have CFS

    I agree with Alea. But my remembering of the statistics is 25% for a parent to pass the illness to a child. I also remember KDM telling me that when one twin is ill, the other is also ill (less ill, but still). In my family, my sibling and I are the third generation (that we know of, with that...
  10. T

    The Truth About the Ice Bucket Challenge

    In my view, HIV is probably the most preventable illness on the planet. And certainly well before heart diseases that have some genetic components. The Indians are the most affected by type 2 diabetes. Still, they have a normal weight, a lacto-vegetarian diet and they walk large distances on a...
  11. T

    My worst doctor story...

    Report that bully to her professional organisation. She'll see that you do not give up in the middle of the task... :D
  12. T

    nothing effects me at all

    If you want my opinion, supplements for ME is a total waste of money. Without them, I have more cash and less crash...
  13. T

    Functional improvement is accompanied by reduced pain in adolescent chronic fatigue syndrome

    2 standard deviations is quite a substantial range... On a Gaussian curve, with 2 SD each side of the average, you actually have 95.5% of the population. Also, 90% of school attendance, that is still 1 day off sick every other week. Over 10 months, that is 22 school days. This is quite...
  14. T

    Accomodation in Brussels while having treatment

    Indeed GG without CJD prions is a wise choice :-)
  15. T

    Accomodation in Brussels while having treatment

    What about something like this? http://www.holidaylettings.co.uk/rentals/brussels-city/643967 It 43€ per night for short stays, but they are willing to consider longer stays (over a month).
  16. T

    Accomodation in Brussels while having treatment

    Yes, I know it is 3-4 times a week. But they way they do it is that they make a small insicion in a vein that will be used for a couple of weeks. They then insert the little pipe of the IV every other day or so. You could imagine to go to Brussels every 2 weeks for the incision itself and then...
  17. T

    Accomodation in Brussels while having treatment

    What about purchasing the IV solutions from KDM and asking a nurse to "plug it in" at your home in the UK? It seems the plan to move to Brussels to get IVs of antibiotics 3-4 times seems a bit complicated.
  18. T

    Stimulants like provigil or nuvigil?

    In my case, Provigil had the effect of amplifying my senses. Sounds were louder, sight was brighter and sharper, ... And pain was worse too! I am bit suprised it is prescribed for fibro... And no, it did not give me any energy.
  19. T

    Do You Want To Know What We Did To Beat Cancer?

    And how many cancer patients died because of that advice?
  20. T

    My trip to see Professor De Meirleir (long post)

    No Nothing happens.
  21. T

    Doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'

    I remember 10 years ago there were accounts of people with CFS being treated with growth hormone who were experiencing what seems to be a complete recovery (going back to full-time employment). i don't know why the idea was abandonned.
  22. T

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    So you use the term "Lyme" to refer to a whole cloud of pathogens in the context of an immune disease. Isn't it ME you are talking about then, instead of Lyme disease? Glad that it worked for you. I nonetheless remember KDM telling me 4-5 months ago that GcMAF was ineffective. It it effective...
  23. T

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    ... like EBV, toxoplasmosis, skeletal tuberculosis, CMV, hepatitis B, syphilis, ... The list is long. The characteristics of Lyme is precisely the non specificity of symptoms. Otherwise the connection would have been made years and even decades ago. Well... A treatment that works for very few...
  24. T

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    This is the web page of the conference in Brussels last month: http://nelelijnen.be/index.php/lyme/300-ronde-tafel-23-april-2014 It is in Dutch, but some of the videos and some of the presentations are in English. For the presentations, go to the very bottom of the page and you'll see, "U vindt...
  25. T

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    He made the same statement before the Belgian Senate. There was another researcher who said that only 35% of ME patients are in fact Lyme patients. I am not debating who is right, who is wrong, but what is damaging is that ME patients will then all be seen as having Lyme. And the very little...
  26. T

    Debates on ME in Dutch Parliament May 14; & Lyme May 15

    15 years ago, he said that 90% had mycoplasms. It is indeed what the lab results indicated. However, despite treatment (long term antibiotics) most people remained ill... Correlation does not mean causation.
  27. T

    I am booked in to see Prof. de Meirleir in January

    @snowathlete I once read that nicotine patches help UC sufferers. I do not know whether it is true, but it might be worth researching it. Good luck!
  28. T

    juicing caused persistent pain. any ideas?

    @fprefect Are you sure you do not have fructose intolerance? If juicing makes you bad, why don't you just stop?
  29. T

    Gamma globulin

    I am with Cowden on this. If every donor was tested for all KNOWN infections, it would cost more than $5,000 for each of them. They therefore would not be able to sell each dose at $46 or so. What they say is that they test for the most common KNOWN infections like Hiv and HepC, and they HOPE...
  30. T

    How many people have been ill with CFS/ME for over 20 years?

    I personally never felt "old", I feel ill. When I was 30, my grandmother was a 'standard' 90 year old in a home. She was the only one who believed that I was actually ill, despite everyone else fobbing me off. She had various health problems (typically old age related), but there were different...