me/cfs

  1. ponypanic

    Symptom advice

    hi I have been off work for 2 months, it started with blood in the urine and feeling like I had flu, a urine sample showed Acinetobacter bunamii and I had the treatment for it ( only sensitive to ciprofloxacin) but I have not improved sufficiently to return to work. I have shaking symptom in...
  2. PrimalPancreas

    Poll Have You Tested for Exocrine Pancreatic Insufficiency (EPI)?

    How many of you have had your exocrine pancreas function tested to check for any level of exocrine pancreatic insufficiency (a.k.a EPI)? EPI happens when your pancreas no longer produces and/or delivers enough pancreatic enzymes in order to break down fats, protein and carbohydrates properly...
  3. Not dead yet!

    Poll Has anyone been to Hunter Hopkins Center in NC?

    This website is from the clinic that Dr. Lapp left behind after he retired. It's in driving distance for me, but I will still have to stay in a hotel. So I'm thinking I should ask around and see what people think of it. I'll add a survey so if you're having a low energy day, you can just...
  4. Master4thDegree

    How I put ME/CFS into remission....& even better

    Our stories leading up to ME/CFS and while battling it have some remarkable similarities. Yet due to subcategories of this illness, many of us fail to respond to treatments that work for others, and in fact some of us may get worse. The science behind ME/CFS is indeed still in it's infancy...
  5. C

    Can I give blood?

    I was sat here thinking what I can actually do to help others. I've donated blood once before but that was before M.E/C.F.S. Does anyone know if I can still give blood? Also before M.E/C.F.S I had glandular fever. Does that mean I should never have given blood? I was never tested to see if...
  6. C

    Salus Fatigue Foundation

    Version:1.0 StartHTML:000000291 EndHTML:000012362 StartFragment:000011953 EndFragment:000012242 StartSelection:000011953 EndSelection:000012242 SourceURL:http://forums.phoenixrising.me/index.php?threads/mirror-my-body-shut-down-woman-reveals-her-heartbreaking-battle-with-cfs.56459/ Mirror: My...
  7. JennyJenny

    ME Research UK and the UK ME/CFS Research Collaborative

    ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect. http://www.meresearch.org.uk/news/me-research-uk-and-the-uk-mecfs-research-collaborative/
  8. JennyJenny

    Mady Hornig, M.D. vs Trustees of Columbia University and Walter Ian Lipkin, M.D.

    Lawsuit: Hornig vs Columbia U and Lipkin https://drive.google.com/drive/folders/0Bzfy9HH9xdjDVVNoWEFxdHNVLUE
  9. JennyJenny

    Health Matters: Chronic Fatigue Syndrome - Radio Broadcast THUR, March 30th, 6PM CNT USA

    Questions will be taken during the show at 1-800-552-8502 or via Twitter @rrrpublicradio. LIVE STREAM at TOP of Page The daily schedule. (Looks like it will be an All Things Considered piece.)
  10. C

    Blood Pressure issues

    I have been ill with ME/CFS for 8 1/2 years. In the last year and a half I have had blood pressure issues - both too high and too low. I just turned 65 (yikes!) and need to get some other "normal" aging issues addressed. I had a dermatologist treatment this week (non invasive) and my blood...
  11. C

    Wearables - which ones do you like and why?

    Hello! I'm interested in tracking my symptoms better and would love to know which wearables people with ME/CFS/Fibro are using. I'm interested in tracking heart rate, sleep quality, and activity levels (steps, stairs, etc.). I know Stanford did a study a while back comparing different wearables...
  12. AquaFit

    ME,CFS,EDS,FM,MS,Myasthenia Gravis and Alzheimers and Acetylcholine

    I posted this on an old POTS thread yesterday, but I thought I'd start it as new one today for more eyes to see. Would love thoughts! I know the healthrising and phoenixrising communities and researchers have examined acetylcholine before. I wanted to take the concept one step further in...
  13. Jill T

    Dr. Alison Bested shares a Message of Hope - film footage

    Shared post from Millions Missing Canada INTRODUCING NEWLY RELEASED FILM FOOTAGE and Fundraising Drive for Remaining Costs 'Message of Hope' Hear Specialist Dr. Alison Bested share her 'Message of Hope' to those of us living and suffering daily with Myalgic Encephalomyelitis as she's...
  14. Jill T

    West Vancouver, BC, Canada - Dr. Hyams Chronic Pain Clinic

    Dr IA Hyams Fibromyalgia and Chronic Pain Clinic Website: http://drhyams.ca/ Facebook: https://www.facebook.com/Dr-Hyams-Fibromyalgia-and-Chronic-Pain-Clinic-100390792062/ Suite 1405 Bellevue Ave. West Vancouver, BC, Canada V7T 1C3 Telephone: (604) 281-2845 Facsimile: (604) 281-2849...
  15. Jill T

    Toronto Canada ME/CFS, FM and MCS Clinic

    Women's College Hospital - Environmental Health Clinic myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity http://www.womenscollegehospital.ca/programs-and-services/environmental-health-clinic/ 77 Grenville St. Main floor, Room 107 Toronto, ON...
  16. Jill T

    News article about MillionsMissingCanada protest

    Shared from Millions Missing Canada. Finally - A Canadian press article outlining our fight for health care and highlighting our Toronto 'Sick-In'. Written by Brock Weir from The Auroran newspaper, our newest vocal supporter in the ME community. "Several people living with ME/CFS gathered in...
  17. ShyestofFlies

    Urinary symptoms, anyone? [ME/CFS]

    From your kidneys, ureters, bladder, and beyond- What's ME/CFS doing to your ability to pee? If you're having urinary symptoms, feel free to answer what you're comfortable with: * New with or after ME/CFS onset? * How troublesome or severe? * How often? * Seeking treatment? Who- PCP/GP...
  18. Cort

    One Gene Many Disorders: Genetic Finding Could Help Explain POTS, EDS, IBS, FM, ME/CFS and Others

    First, at least for me, there was chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Then I learned about irritable bowel syndrome (IBS), then POTS and in the last five years Ehler’s-Danlos (EDS) and Mast Cell Activation Syndrome (MCAS). The more researchers looked the more they seemed...
  19. U

    3rd Q&A Session with Younger Lab on Sept. 2, 2 pm CDT

    On September 2 at 2 pm CDT, the UAB Younger Lab (Neuroinflammation Pain and Fatigue lab) will host the 3rd live Q&A Session on YouTube. The topic this time will be about the research at the lab, both present and future. Some questions that will be answered: How does the new metabolomics study...
  20. mymichelina

    TVAM (Transvascular Autonomic Modulation)

    TVAM (Transvascular Autonomic Modulation).....performed at Autonomic Specialists, an autonomic diagnosis and treatment center located in Newport Beach, CA. Has anyone heard of this? tried it? know anyone who has? I read a blurb about Yolanda Hadid (from Housewives of Orange County) and ex wife...

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