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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. Forbin

    vertigo

    Does it feel like you are spinning, or is it more like you are bobbing back and forth? Are your eyes having trouble converging - or remaining converged - on the same spot? In other words, do you have double vision (which can be fairly subtle as opposed to seeing two distinct images...
  2. Forbin

    New US tax law - attorney's fees no longer deductible

    I'm not a lawyer, or an accountant, but could your lawsuit be considered related to personal injury / physical sickness? Settlements in such lawsuits seem to be tax free, even in 2018. Were that the case, the attorney's portion of the settlement would still not be deductible, but there would be...
  3. Forbin

    Ginger/Red Hair or other?

    I suspect it was this thread: http://forums.phoenixrising.me/index.php?threads/llewellyn-king-interviews-dr-kenny-de-meirleir-me-cfs-alert-episode-42.22855/
  4. Forbin

    Dizziness / motion sickness

    I would suggest seeing an otologist. They are the experts in hearing and the inner ear (where balance is controlled). They are not to be confused with audiologists, i.e. those whose principal concern is measuring hearing loss. Balance impairment is a fairly specialized field. One's best bet at...
  5. Forbin

    "Unrest" viewing schedules on PBS

    Greater Los Angeles - Southern California Area PBS SOCAL1 January 8 - 10:00 PM January 9 - 4:00 AM PBS SOCAL WORLD January 10 - 5:30 PM January 10 - 10:30 PM January 11 - 6:30 AM January 11 - 12:30 PM January 13 - 9:00 AM http://www.pbssocal.org/schedule/?program=5082...
  6. Forbin

    Research update from Prof. Ron Davis (video!)

    When Dr. Davis mentioned the "sticky" blood of ME patients having trouble getting through the artificial capillaries of the nano-needle, it reminded me of a somewhat forgotten ME/CFS outbreak that occurred in the mid 70's, nine years before Lake Tahoe. In 1975, there was an outbreak of an...
  7. Forbin

    Derya Unutmaz t-cell findings and gut connection

    I hope he looks at other microbes of the gut in addition to bacteria, like fungi.
  8. Forbin

    Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

    Thanks for reminding me... DONATED. You can donate to Columbia's ME/CFS research here: https://www.givenow.columbia.edu/?_sd=588&_sa=21677#
  9. Forbin

    Propranolol?

    Propranolol is given for anxiety, among other things. I know that it is sometimes taken by professional musicians to combat "stage fright" that would otherwise effect the fine motor control they need to perform. My understanding is that propranolol works in this fashion by interrupting the...
  10. Forbin

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    Since David Tuller does not have ME/CFS, the question should be, 'What makes some of her supporters assume that it's only ME/CFS patients who are challenging Professor Crawley?"
  11. Forbin

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    It's actually up for debate whether the part in blue is directly related to the part in black, i.e. whether the "senior level communications" involved Berkeley or were entirely confined to Bristol. The idea that UC Berkeley, birthplace of the free speech movement in the 1960's, would be...
  12. Forbin

    NYT New Recognition for Chronic Fatigue

    The drawing of a sufferer that accompanies this article is interesting. The posture of the seated figure has her reclined at a severe angle in the chair - virtually as close to lying down as one could be in that chair. It's interesting because, as I recall, this was a posture that was mentioned...
  13. Forbin

    NYT New Recognition for Chronic Fatigue

    True. When I look over my notes from when I first became ill (several years before they came up with the term "Chronic Fatigue Syndrome"), I never used the word "fatigue," simply because it implies a reaction to effort. I used words similar to those you've used above. It's true that people get...
  14. Forbin

    Mifepristone for ME/CFS? (NK Cell Function / HPA Reset)

    This is obviously in a way different realm than the HPA axis, but abnormal heart rhythms (most dramatically ventricular fibrillation) can be "reset." You could argue that v-fib is not sustainable, but AFib can go on for a long time.
  15. Forbin

    David Tuller: My brief encounter with Prof Crawley

    Are you wondering, perhaps, if they're considering whether she's "an asset to the abbey" ?
  16. Forbin

    Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

    Her slide on "Climbing the Mountain" seems oddly reminiscent of the nature of quantum energy states, where there are discrete levels of stability but no "in between" states. A specific input or loss of energy is required to instantly shift between levels. In GWI and ME/CFS it seems like the...
  17. Forbin

    Terrible Wikipedia article on MECFS! (CBT, etc)

    I tried using the internet archive "wayback machine" to look for recent changes. Sometime between 8/25/17 and 9/29/17, the first line of the section on CBT was changed to... [ The link [85] is to the CDC ME/CFS website: https://www.cdc.gov/me-cfs/index.html. ] Thus giving the impression that...
  18. Forbin

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    The photo seems less about "I have a debilitating disease," and more about "Calgon, take me away!"
  19. Forbin

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    I'm using Chrome and I've found that if I click on the "X" (STOP) button on the menu bar after an article comes up - but before the sign-in pop-up shows up - then (usually) the pop-up never appears and you can read the article. This may only be possible because my internet connection is slow...
  20. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    Below is an article on the use of antiserum in the 1934 LA polio outbreak. The article was published about six months after the outbreak began (in December 1934). Two types of serum were used. Pooled serum from healthy adults and serum from convalescent polio patients. The serum from polio...
  21. Forbin

    Dr David Tuller 13th Nov: Trial by Error: the surprising new BMJ Best-Practice Guide

    At the moment, I'm getting a notice from the BMJ that this is a broken link. I'm in the US, so it might be different elsewhere.
  22. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    Thanks for suggesting this. Just my luck, I went over the whole report only to discover that the relevant information was on the last two pages. :bang-head: I've attached those last two pages (89-90). The gist of it is that of the 196 hospital staff members who became ill with ME-like symptoms...
  23. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    Yes, it's a bizarre irony that the first director of NCCAM was Dr. Stephen Straus, perhaps the one person most responsible for ME/CFS being dismissed as "all in the head" for three decades.
  24. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    Well, what was known as "convalescent poliomyelitis serum" was certainly given to patients in the 1934 Los Angeles outbreak. According to this article of the time, they produced some 15 gallons of the stuff and attempted to administer it as soon as possible to persons who showed the first signs...
  25. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    It sounds like an attempt to confer temporary passive immunity by administering an antiserum. It's basically taking antibodies from someone who had recovered from, or is naturally immune to, an infectious disease and giving them to someone who has been, or might be exposed. The antibodies attack...
  26. Forbin

    Psychology Today: 'CF patients, more research backing you'

    Good article, but it concludes with an "88% recovered after 12 years" stat for "young people" with no mention of the recovery rate for adults, leading one to infer that the recovery rate in adults is probably similar.
  27. Forbin

    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    I'm not sure if the timeline works out on this. I've looked at LA Times articles of the period and one says that three doctors involved in the Park-Brodie vaccine, including Dr. Park, inoculated themselves with it on July 5, 1934 to see it was safe to give to children. However, the LA County...
  28. Forbin

    Well here's a treat: Two videos of Ms Crawley, leading ME researcher, (!) delivering her TEDx talk

    Persevering in the face of the objections of others is not, in and of itself, necessarily a virtue. You have to be aware of what the objections are in order to judge. She never mentions the nature of her trial, what was being tested, or the basis of her detractors' objections. Never-the-less...
  29. Forbin

    Has anybody here also got haemochromatosis and got their blood volume measured?

    One of the first things my doctor was suspicious of when I got ill (30+ years ago) was haemochromatosis. It was a long shot, but he knew my ancestry was Scandinavian, and he probably was familiar with haemochromatosis because the local area had a relatively large Scandinavian population. [The...
  30. Forbin

    Esther Crawley's BristolTEDx talk video (Nov. 2, 2017)

    True, but the video that was up there was of the entire day's presentations, so it would have been impossible to attribute the view count to any one presentation. It's a moot point now, as the video has vanished from the page altogether.