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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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    Article: Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fibromyalgia and C

    re: interstitial cystitis and Dr. Clauw's comment. If one goes to the ICA.org webstite you will see that there has been almost NO research money spent on this disease. 100 million dollars??????????? The Iterstitial Cystitis Association was started by a female surgical resident who couldn't get a...
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    Doctors in Boston Area

    yes, i have.
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    Am looking for primary in Boston area

    I am looking for a new doctor in the Boston area.
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    Doctors in Boston Area

    Can anyone recommend a doctor/doctor's in Boston area.
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    Faecal transplant eases symptoms of Parkinson's (and CFS)

    I'd like to add when I was dx in 65 I was told it was a psych disease. They had elaborate theories that even involved the type of mother you had. The psych theories kept changing so I kept getting different personalities. It didn't matter that they had pathology slides and deaths frequently...
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    Faecal transplant eases symptoms of Parkinson's (and CFS)

    I have Crohn's disease and see nothing funny about this topic. I have been following the research. I've been in remission for forty yrs but still am very susceptible to g.i. problems. I had a colonoscopy two wks ago and my gastro (who's top notch) was thrilled. HOWEVER, SINCE THE PREP I'VE BEEN...
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    Famous (and sort of famous) ME/CFS sufferers

    Leila Pahlevi committed suicide; she also had severe anorexia and bulimia. I saw a documentary where her mother talked about her. She sounded like a very troubled person; her brother committed suicide this yr. It sounds like that family never got over being exiled. Money was not an issue in...
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    Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

    I was very aware of the AIDS fight because my late cousin died of AIDS. We were like brother and sister; I was the only family member he told that he was HIV positve. There was an egomaniac research situation that slowed things down. Gallo, in the U.S., claimed he discovered the HIV virus when...
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    Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

    My late cousin died of AIDS. We were like brother and sister; I was the only family member he told that he was HIV positive. Aside from the predictable politics, there was a research war that slowed down treatment, etc. Gallo, in the U.S., claimed that he found HIV, when in truth, it was a...
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    Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

    I'm a member of MassCfids. Unless something goes wrong with equipment (unforseen problem) they are very good about videos, etc. I am a newletter subscriber.
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    Dr. Bell Boston lecture 4.16.2011: Assessment of NIH State of Knowledge conference

    I was in a flare but (stupidly) went. Dr. Bell didn't talk about the NIH proceedings but about his study of Lyndonville patients thirteen yrs later. I was really disappointed. If I'd felt O.K. I wouldn't have cared but I'd read the study. I didn't take detailed notes; I felt too awful.
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    Burning sensations in eyes

    I saw twenty five opthamologists thirty two yrs ago. My symptom was constant burning; I had trouble opening eyes in a.m. The twenty fifth finally dx me with dry eye and gave me preservative free single saline drops, which were not on the market at the time. His name is Dr. Steven Foster, in...
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    Prostatitis, Pelvic Pain etc. in CFS

    interstitial cystitis is common in women with CFS and UNDERDIAGNOSED in all men. many men with i.c. are told they have prostatitis. i.c. does not respond to antibiotics. i do take a supplement for i.c. that does contain quercitin.
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    OH, SNAP! Patient Advocate and NYT

    Please don't get me wrong; I'm thrilled to see any good coverage of CFS. Some of my friends actually thought the ad for Lyrica and FMS was coverage of CFS and FMS. Rich people read the WSJ and some of them undoubtedly have family and/or friends with CFS.
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    OH, SNAP! Patient Advocate and NYT

    Actually the NYT has been covering XM research. As recently as Dec.13, in the Health section, it's part of an article and two people responded re CFS. One with a link to the Washington Post ad. Ian Lipkin was in the magazine section in Nov re virology and the work he's doing in autism. XM was...
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    OH, SNAP! Patient Advocate and NYT

    How quickly we forget. Last yr when the Science article broke, the NYT was the ONLY paper to cover it extensively. I went on this board and begged people to write online comments to keep it going but only a few did. I read four newspapers a day online and NOWHERE was the amount of coverage that...
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    Is life worth living with this?

    You have mentioned many symptoms. You and I assume they're related, but when I applied for disablility I never mentioned CFS even though I had a firm diagnosis. I listed all my illness's seperately. I don't know what your job is but H.R. may try to make accomodations for you. I worked too long...
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    Mitochondrial doc and enzyme co Q 10

    I will start on a low dose eventually. However, I am not optimistic because my g.i. tract is my weak link. I am aware of the side effects. It took five days for my gut to get back to normal.
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    hyperparathyroidism: doc sending me to uber specialist

    i haven't had scans done. doctor will go to next step if D is normal and parathyroid still high. he said he sees about fifteen cases a wk like mine. most docs don't see fifteen cases like mine ever; i really trust him. the ice cream was the nicest thing; of course i was very thin then and could...
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    hyperparathyroidism: doc sending me to uber specialist

    If we can't get my D levels up, I will see either Dr.Bess Dawson Hughes at Tufts or Dr. Howland at Boston Medical Center. They are two of the five experts in D in the U.S. I saw Dr. Hughes many yrs ago and my D was normal, but the test and numbers were different. I loved Dr. Hughes because she...
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    hyperparathyroidism: doc sending me to uber specialist

    I wanted to add that EVERY doctor I spoke to totally believes in CFS. They are at three different medical centers; my gastro sees a lot of CFS patients who have IBS and CFS and is stunned at their level of fatigue. My shrink always believed in it; he has a colleague who was out of work for over...
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    hyperparathyroidism: doc sending me to uber specialist

    I had read this carefully. It still doesn't apply to me because the author talks about low calcium and low D. My calcium has been normal for fifteen yrs; it is not causing low D which is what the author is discussing. Because people who had the type of surgery for Crohn's that I had, my gastro...
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    hyperparathyroidism: doc sending me to uber specialist

    if my D goes up and i still have hyperparathyroid then doctor will have to look further. but i really trust this doc; he showed my how my parathyroid went up and down with my D. i will ask about D3. i've been on 100,000 a wk and now am on 50,000. i was on the higher dose when my D was 14. Sushi...
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    American Red Cross Defers CFS Donors

    my late mother volunteered for the ARC with the travelling blood bank. she said yrs ago that the ARC was VERY conservative about donations, especially after HIV. E.g. a lupus dx disqualifies you although they have no evidence you could transmit antibodies.
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    Anyone feel better when they get the flu or a cold?

    I feel like hell, am sick much longer than other people, but my interstitial cystitis gets better;however when I get better it's much worse. I noticed this this twenty five yrs before I got CFS. I do ANYTHING to avoid colds and flu. My former CFS doc said her patients do get sick, sometimes...
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    hyperparathyroidism: doc sending me to uber specialist

    not sure which D but i think it is nmol. article that came out last wk differs in opinion on some D ideas but they don't affect me. I've been on high scrip of D for almost a yr so i wonder how i'll get it to fifty. my pcp, who specialist knows, will take over. she put me on 100.000 units about a...
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    Mitochondrial doc and enzyme co Q 10

    After waiting about eight months I saw Dr. Stephen Massaquoi at Mass General Hospital. Dr. Kenneth Sassower, a neuro and my sleep specialist, made the referral. The good news is that I was in a crash when I saw him; the bad news is that I was in a crash when I saw him. (I had waited a couple...
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    hyperparathyroidism: doc sending me to uber specialist

    saw specialist today. said hyperparathyroid levels are too high because D is too low. D isn't that low but he wants it at least at 50. Says CFS patients share some symptoms with D deficiency. really liked him; he definitely believes in CFS. told me i'm very flexible, well toned and NOT to...
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    Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

    I'd also like to add that the title of his book upsets me: 7 Proven Steps to More Energy and Less Pain There is very little "proven" in science and medicine. No matter how well he means and that he's a good guy, brilliant he's not. And this sort of thing is not helpful. I expect people will...
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    Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

    Cort, I also failed to mention that my mother developed multiple personalities too. Yrs before me there was a famous psychiatrist who said he could cure ulcerative colitis (Crohn's sister disease.) I think his name was Hahneman but I have to check. Two groups of people with corresponding...