ME/CFS symptoms, diagnosis, and potential treatments

Here are some links to resources that provide detailed information about ME/CFS diagnosis, symptoms, and potential treatments:

Using Phoenix Rising
Searching: Our Google Site Search is more accurate than our forum's built-in search. One drawback is that it doesn't include results from all areas of Phoenix Rising, such as posts that are viewable only by members. I recommend trying the Google Site Search first, then the using built-in search found near the top-right corner of each page.

Questions: We have many sub-forums for various topics related to ME/CFS. Questions posted in the appropriate sub-forum will usually receive more answers than questions posted in your welcome thread because they will be read by more people.

COVID-19 Information
ME/CFS Resources and Support for the COVID-19 Long Haulers - A detailed guide from Health Rising about symptoms and their management for people who had COVID-19 but are now having long-term problems. It's also useful for anyone who has ME/CFS.

COVID-19 Resources for People with ME, from MEAction. Information about the coronavirus outbreak, its effect on people with ME, resources for coping and adapting.

Information leaflets from the ME Association. Especially useful for UK residents.

ME/CFS symptoms and diagnosis
U.S. ME/CFS Clinician Coalition - Resources for Medical Providers Caring for People with ME/CFS. This site provides clinicians with high quality information on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It's very useful if you have a doctor who is willing to use it as a reference.

2020 ME/CFS Clinician Coalition Handout: Basics of Diagnosis and Treatment

Canadian Consensus Criteria - Comprehensive diagnostic criteria agreed upon by ME/CFS specialists.

International Consensus Criteria - Another document of comprehensive diagnostic criteria agreed upon by ME specialists.

IOM Diagnostic Criteria - This criteria is less detailed than the CCC or ICC but is easier to understand.

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List - Useful for finding symptoms you didn't realize may be related to ME/CFS.

Finding a Clinician
There are two types of doctors who may be able to help: 1) those who will be willing to provide a diagnosis of ME/CFS but don't have the knowledge to treat it, and 2) the small minority who diagnose and attempt to treat ME/CFS (with mixed results since response is so individual).

If you are still uncertain about your health then a useful approach is to first look for a doctor that can help you rule out conditions that share many symptoms with ME/CFS (see Hip's Roadmap for more info). If the doctor determines that you meet the criteria for a ME/CFS diagnosis you can then start looking for a ME/CFS specialist. Be aware that specialists often have very long waiting lists.

Global clinician databases:
* World map of specialists treating chronic fatigue syndrome (ME/CFS) and chronic inflammatory response syndrome (CIRS).
* #MEAction Global Clinician Database
* Health Rising has a list of clinician databases for finding ME/CFS and FM doctors around the world.

USA clinician database: The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society has a Physician and Clinic Database with ratings and reviews.

Phoenix Rising has a ME/CFS Doctors subforum where you can ask about doctors in your area.

Testing, treatment, and support
Hip's Roadmap for Testing and Treatment - Hip is a member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions (including CCI/Craniocervical instability), and covers potential treatments.

Hip's list of supplements and drugs that prevent or reduce PEM for some people with ME/CFS.

Hip's List of ME/CFS Recovery and Improvement Stories - "a thread for ME/CFS recovery or improvement stories, detailing patient accounts of treatments which have led to full recovery or substantial improvements in their overall ME/CFS symptoms, as well as treatments which have substantially improved specific ME/CFS symptoms (like fatigue, PEM, brain fog, sound sensitivity, etc)."

Hip has a list of other useful resources on this page. [url=http://www.cfstreatmen....html]Erica Verrillo's CFS Treatment Guide 2e - An older but still excellent, very detailed guide published in 2012.

ME/CFS: A Primer for Clinical Practitioners - 2014 Edition (2.5 MB PDF)

This overview document (PDF) is intended to help a carer or other people around you to understand many of the physical and cognitive difficulties faced by a person with ME/CFS, along with some of the causes of those problems.

American SSDI - PR member nyanko_the_sane has created a thread here with links to resources and information about the American Social Security Disability Insurance system, including useful application tips.

Warnings about GET and CBT
A small minority have reported benefits from very cautious use of gentle exercise but consider carefully before following a course of Graded Exercise Therapy (GET), or GET combined with Cognitive Behavioral Therapy (CBT), because many people with ME/CFS have said that it resulted in serious or even permanent worsening of their health.

From MEAction: GET (graded exercise therapy) and CBT (cognitive behavioral therapy) are not safe for ME – summary of survey results
"Following treatment, over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration. Following roughly the same pattern as impact on physical health, a majority (53%) of those undergoing GET experienced a deterioration in their mental health. This increased to 62.9% when the respondent had also undergone CBT."

This article by the science writer Julie Rehmeyer describes some of the bad science behind the PACE trial, the $8 million study that was used to justify the use of GET and CBT with ME/CFS patients. The article also covers a new analysis of the PACE trial data. This excerpt is important: "The [new] analysis shows that if you’re already getting standard medical care, your chances of being helped by the [GET and CBT] treatments are, at best, 10 percent. And your chances of recovery? Nearly nil."


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