• Planning to Register on Phoenix Rising?

    Phoenix Rising is an online discussion forum and community for patients with the illness myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). You are invited to join Phoenix Rising if you have ME/CFS, suspect you may have it, or have been diagnosed with an ME/CFS-like condition such as dysautonomia, MCAS, fibromyalgia or Long COVID, which you think might be ME/CFS-related.

    If you are a caregiver of an ME/CFS patient, a researcher, a journalist, a physician or other medical professional, you are also welcome to join the forum, provided you plan to post about ME/CFS issues. Generally we do not allow people to join the forum to post about health issues unrelated to ME/CFS; this is in order to keep this forum focused on ME/CFS and its related conditions.

    To register an account, press the Register button at top right.

    If you join Phoenix Rising, please read our forum rules before posting.

    If you are a researcher looking for study participants, please contact a moderator prior to posting on the forum.

Phoenix Rising ME/CFS Forums

New posts

News, Research, and Campaigns

Upcoming ME/CFS Events

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284
Messages
6,318
Threads
284
Messages
6,318
CDC ME/CFS Stakeholder Conference Call May 13, 2021

News and Research

ME/CFS and other health news and research
Threads
14,342
Messages
228,799
Sub-forums:
  1. General ME/CFS News
  2. Latest ME/CFS Research
  3. Articles
  4. Other Health News and Research
  5. Active Clinical Studies
Threads
14,342
Messages
228,799
Will You Be Getting the Covid Vaccine?

Advocacy and Fundraising

Advocacy, fundraising and petitions
Threads
3,050
Messages
59,366
Sub-forums:
  1. Action Alerts and Advocacy
  2. Advocacy Projects
  3. Petitions
  4. Fundraising
  5. Institute of Medicine (IOM) Government Contract
  6. Millions Missing Campaign
Threads
3,050
Messages
59,366
Dr David Tuller Crowdfunding - April 2021
  • Mary

General ME/CFS Discussion

General ME/CFS Discussion

A place to discuss general issues related to ME/CFS that don't seem to fit in any other forum. If you want a more private discussion, you can post in the 'Members Only ME/CFS Discussion' forum.
Threads
4,609
Messages
91,454
Threads
4,609
Messages
91,454
Women and Covid vaccine

Symptoms and Treatments

Symptoms

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4,968
Messages
83,171
Sub-forums:
  1. Post-Exertional Malaise, Fatigue, and Crashes
  2. Pain and Inflammation
  3. Neurological & Neurosensory
  4. Cognition
  5. Sleep
  6. Peripheral Neuropathy
  7. Immunological
  8. Hypersensitivity and Intolerance
  9. Autonomic, Cardiovascular, and Respiratory
  10. Hormones
  11. Gastrointestinal and Urinary
  12. Skeleton, Skin, Muscles, Hair, Teeth and Nails
  13. General Symptoms
Threads
4,968
Messages
83,171
If walking is an issue do we use mobility aids ?

Treatment and Therapy

Threads
13,141
Messages
233,229
Sub-forums:
  1. General Treatment
  2. Mold, Biotoxins, Chemical/Food Sensitivities
  3. Antivirals, Antibiotics and Immune Modulators
  4. Alternative Therapies
  5. Methylation, B12, Glutathione, Detox and Chelation
  6. GcMAF
  7. Genetic Testing and SNPs
  8. Problems Standing: Orthostatic Intolerance, POTS
  9. Rituximab: News and Research
  10. The Gut: IBS, SIBO, Leaky Gut, Gastroparesis
Threads
13,141
Messages
233,229
Anyone tried Plasma exchange as an alternative to IVIG?

Doctors and Diagnostics

Doctors, diagnostic guidelines, and lab tests
Threads
1,984
Messages
27,729
Sub-forums:
  1. ME/CFS Doctors
  2. Diagnostic Guidelines and Laboratory Testing
Threads
1,984
Messages
27,729
Need Help Interpreting Labs: Neutropenia, EBV, other infections. Docs calling it Anxiety/Depression.

Comorbid Conditions / Differential Diagnoses

Comorbid Conditions

Threads
1,717
Messages
29,905
Sub-forums:
  1. Connective Tissue Disorders: EDS, CCI
  2. Mast Cell Activation Syndrome
  3. Lyme Disease and Co-Infections
  4. Fibromyalgia
  5. Thyroid Dysfunction
  6. Adrenal Dysfunction
  7. Fungal Infection (Yeast, Candida)
Threads
1,717
Messages
29,905
Anyone taking montelukast, and if so, what does it help with?

Differential Diagnoses

Threads
46
Messages
250
Sub-forums:
  1. Multiple Sclerosis
Threads
46
Messages
250
Sleep Apnea

Living with ME/CFS

Living with ME/CFS

Lifestyle management, finances, relationships (members only), spirituality, and a place for parents and caregivers to meet (members only).
Threads
1,518
Messages
26,718
Sub-forums:
  1. Lifestyle Management
  2. Finances, Work, and Disability
  3. Spirituality and ME/CFS
Threads
1,518
Messages
26,718
CPET Test for disability?
  • *GG*

In Memory of ...

In Memory of ...

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65
Messages
1,358
Threads
65
Messages
1,358
Gillian McCarthy passed away on 2nd February 2021, link to her funeral service.

Miscellaneous

Resources, Projects, and Archives

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2,225
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59,149
Sub-forums:
  1. Google Site Search
  2. Supplement Shopping Search
  3. Information and Resources
  4. Phoenix Rising Projects
    1. Create A 'PatientsLikeUs' ME/CFS Treatment Program
    2. Patient Data Repository & Treatment Review Project
  5. XMRV Archives
    1. XMRV Research and Replication Studies
    2. XMRV Testing, Treatment and Transmission
    3. Media, Interviews, Blogs, Talks, Events about XMRV
Threads
2,225
Messages
59,149
Useful books relating to ME- for patients, and others

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