Welcome to Phoenix Rising!
Here are links to resources, originally compiled by @PatJ, providing information about Phoenix Rising, ME/CFS diagnosis, ME/CFS symptoms and potential ME/CFS treatments:
Using Phoenix Rising
Here are links to resources, originally compiled by @PatJ, providing information about Phoenix Rising, ME/CFS diagnosis, ME/CFS symptoms and potential ME/CFS treatments:
Using Phoenix Rising
- Browsing the latest discussions: To browse the latest posts in our discussion threads, simply click the New Posts link.
- Searching for discussions by topic: There is a forum search facility at the top-right corner of each page, and also a Google site search.
- Abbreviations and acronyms: This list of acronyms explains some of the most common abbreviations used on this forum.
- Tips for making your own posts: First, make sure you review our Posting Guidelines. You can make a post in an existing discussion thread by typing it in the box at the bottom of the discussion thread.
- Questions for other people: We have many sub-forums for various topics related to ME/CFS. For technical support, you can post in the Technical Support sub-forum, or use the Contact Us link at the bottom of every page.
- How should I name my thread: Nobody pays attention to threads with vague titles like "need help with something" or "has anyone else noticed this?" Instead, make your thread titles specific and descriptive, like "Please help me figure out my mobility problem" or "Has anyone else noticed a worsening of PEM in the summer months?"
- Following other members: If you would like to "follow" another forum member, you can read this explanation of following.
- Vision problems: If you are light sensitive, you can switch to the "Phoenix Dark" interface by clicking on "Phoenix Light" at the bottom of the page, and then selecting "Phoenix Dark". If you have trouble seeing small letters, you can select the "Phoenix Light - Low Vision" interface, which has larger letters.
ME/CFS Symptoms and Diagnosis
To determine if your symptoms may be consistent with ME/CFS, you can use the following ME/CFS diagnostic criteria:
- Canadian Consensus Criteria (CCC) — A comprehensive exacting set of diagnostic criteria for ME/CFS, agreed upon by leading specialists.
- International Consensus Criteria (ICC) — An updated comprehensive set of diagnostic criteria, based upon the Canadian consensus criteria.
- IOM Diagnostic Criteria — A simple set of diagnostic criteria less detailed and less exacting than the CCC or ICC, but easier to understand.
COVID-19 Information
Here are COVID-19 Resources from the research and advocacy organization Solve ME. Long Covid symptom tracker, research opportunities, and how to know if your Long Covid might be related to ME/CFS. The Long Covid Alliance is an international alliance of Long Covid organizations.
Finding a Doctor
Finding a Doctor
There are two types of doctors who may be able to help: (1) those who are willing to provide a diagnosis of ME/CFS, but don't have the knowledge to treat it; and (2) the small set of internationally famous doctors who diagnose and attempt to treat ME/CFS (with mixed results since response is individual).
If you are questioning whether you have ME/CFS, then a useful approach is to first look for a regular primary care doctor who can help you rule out conditions that have similar symptoms to ME/CFS. If such a doctor can rule out other conditions, and determines that you meet the criteria for ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist.
To look for a doctor in your area, you can search through a List of Doctors, or you can ask for advice in our ME/CFS Doctors sub-forum.
ME/CFS Clinician Coalition — provides doctors with information on the diagnosis and management of ME/CFS. Useful if you have a doctor who is willing to use it as a reference.
For Severe ME/CFS Patients
If you are questioning whether you have ME/CFS, then a useful approach is to first look for a regular primary care doctor who can help you rule out conditions that have similar symptoms to ME/CFS. If such a doctor can rule out other conditions, and determines that you meet the criteria for ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist.
To look for a doctor in your area, you can search through a List of Doctors, or you can ask for advice in our ME/CFS Doctors sub-forum.
ME/CFS Clinician Coalition — provides doctors with information on the diagnosis and management of ME/CFS. Useful if you have a doctor who is willing to use it as a reference.
For Severe ME/CFS Patients
ME/CFS may be mild, moderate, severe or very severe. About 25% of ME/CFS patients suffer from severe or very severe ME/CFS, and they may require specialized care. For basic information on severe ME/CFS, see this resource from the 25% ME Group.
This article on supporting a patient with severe ME/CFS is intended to help a carers understand many of the physical and cognitive difficulties faced by a person with ME/CFS. The authors also provide an easier-to-read downloadable introduction, as well as an article written for the nursing profession.
A severe ME/CFS patient wrote a book about living with severe ME/CFS, and shares her experience on a blog called Surviving Severe ME. For further information related to severe ME/CFS, see this MEpedia page.
If you are currently bedbound with severe ME/CFS, you can connect with other bedbound people in our Living Life from a Bed sub-forum.
Getting Disability Benefits
This article on supporting a patient with severe ME/CFS is intended to help a carers understand many of the physical and cognitive difficulties faced by a person with ME/CFS. The authors also provide an easier-to-read downloadable introduction, as well as an article written for the nursing profession.
A severe ME/CFS patient wrote a book about living with severe ME/CFS, and shares her experience on a blog called Surviving Severe ME. For further information related to severe ME/CFS, see this MEpedia page.
If you are currently bedbound with severe ME/CFS, you can connect with other bedbound people in our Living Life from a Bed sub-forum.
Getting Disability Benefits
US Social Security Disability Insurance (SSDI) — PR member nyanko_the_sane has created a discussion thread called SSDI Resources of Interest with links to information about the US government's Social Security Disability Insurance system, including useful application tips.
US Long-term Disability Insurance (from your employer) — This discussion describes some of the tactics used by insurance companies and how patients might counter those tactics.
If You Just Need to Talk to Someone
US Long-term Disability Insurance (from your employer) — This discussion describes some of the tactics used by insurance companies and how patients might counter those tactics.
If You Just Need to Talk to Someone
If you need to talk to someone faster than by posting on Phoenix Rising, see here.
ME/CFS in Your Country
ME/CFS in Your Country
We have discussion threads for some countries: France, Spain, Germany, Brazil, Japan, China, Denmark, Sweden, Norway.
Tips on Testing and Potential Treatments
Tips on Testing and Potential Treatments
Hip, a patient and member of Phoenix Rising, compiled a document which covers many potential ME/CFS treatments: Hip's Roadmap for Testing and Treatment.
Hip's List of ME/CFS Recovery and Improvement Stories details patient accounts of treatments which have led to substantial improvements in their ME/CFS symptoms.
Long-time patient Erica Verrillo of AMMES published a CFS Treatment Guide. It's an older but still excellent guide, published in 2012.
Warnings About GET and CBT
Hip's List of ME/CFS Recovery and Improvement Stories details patient accounts of treatments which have led to substantial improvements in their ME/CFS symptoms.
Long-time patient Erica Verrillo of AMMES published a CFS Treatment Guide. It's an older but still excellent guide, published in 2012.
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 great 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. Excerpt: "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".
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 great 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. Excerpt: "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".