me/cfs

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...
- ponypanic
- Thread
- Oct 2, 2019
- Replies: 0
- Forum: General Discussion
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...
- PrimalPancreas
- Thread
- Apr 28, 2019
- Replies: 0
- Forum: Testing and Diagnosis
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...
- Not dead yet!
- Thread
- Nov 21, 2018
- Replies: 0
- Forum: General
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...
- Master4thDegree
- Thread
- Oct 8, 2018
- Replies: 3
- Forum: General
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...
- Curly
- Thread
- Apr 17, 2018
- Replies: 2
- Forum: General
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...
- Chocolove
- Resource
- Dec 3, 2017
- Category: Chronic Fatigue Syndrome (ME/CFS) - Overviews
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/
- JennyJenny
- Thread
- May 22, 2017
- Replies: 2
- Forum: General Discussion
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
- JennyJenny
- Thread
- May 22, 2017
- Replies: 33
- Forum: General Discussion
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.)
- JennyJenny
- Thread
- Mar 29, 2017
- Replies: 2
- Forum: General Discussion
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...
- Christine Williams
- Thread
- Feb 24, 2017
- Replies: 2
- Forum: Heart Rate Variability for Better Health
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...
- Carolineelizabeth
- Thread
- Jan 30, 2017
- Replies: 6
- Forum: General Discussion
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...
- AquaFit
- Thread
- Jan 4, 2017
- Replies: 9
- Forum: Other Research
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...
- Jill T
- Thread
- Dec 3, 2016
- Replies: 3
- Forum: General Discussion
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...
- Jill T
- Resource
- Nov 10, 2016
- Category: Practitioners
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...
- Jill T
- Resource
- Nov 10, 2016
- Category: Practitioners
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...
- Jill T
- Thread
- Nov 2, 2016
- Replies: 2
- Forum: General Discussion
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...
- ShyestofFlies
- Thread
- Oct 24, 2016
- Replies: 13
- Forum: Symptoms
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...
- Cort
- Thread
- Oct 20, 2016
- Replies: 47
- Forum: Other Research
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...
- usedtobeperkytina
- Thread
- Aug 31, 2016
- Replies: 0
- Forum: Chronic Fatigue Syndrome (ME/CFS) Research
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...
- mymichelina
- Thread
- Aug 24, 2016
- Replies: 7
- Forum: Testing and Diagnosis