Welcome to Phoenix Rising!
Here are some links to resources, originally compiled by the amazing @PatJ, that provide detailed information about Phoenix Rising, ME/CFS diagnosis, symptoms, and potential treatments:
Using Phoenix Rising
COVID-19 Information
Here are some links to resources, originally compiled by the amazing @PatJ, that provide detailed information about Phoenix Rising, ME/CFS diagnosis, symptoms, and potential treatments:
- Browsing the latest discussions: To browse the latest posts in our discussion threads, simply click the New Posts link.
- Searching for discussions by topic: Although there is a search link found near the top-right corner of each page, our Google Site Search is more accurate. Although the search link found near the top-right corner of each page searches the entire forum, the Google Site Search only includes public posts. (Excluding any posts that are viewable only by members) We recommend trying the Google Site Search first, then the built-in search found near the top-right corner of each page.
- Abbreviations and acronyms: As you look through the forum, you may see abbreviations or acronyms that you don't understand. To help you out, our list of acronyms explains some of the most common ones.
- If you have vision problems: If you are light-sensitive, you can switch to our "Phoenix Dark" interface. First, look for the "Phoenix Light" link generally found in the bottom left of the screen. By clicking on the link, you can switch from our "Phoenix Light" interface to our "Phoenix Dark" interface. If you have trouble seeing small letters, you can select our "Phoenix Light - Low Vision" interface, which has larger letters.
- Tips for making your own posts: First, make sure you review our Posting Guidelines before making a post. You can make a post in an existing discussion thread by typing it in the box at the bottom of the discussion thread, as described in Posting 101. If you want to learn advanced techniques, you can read How to Edit a Post. When you're ready to start a new discussion thread, see Starting a Thread.
- Questions for other people: We have many sub-forums for various topics related to ME/CFS. Questions posted in the appropriate sub-forum will usually receive more responses than questions posted in your welcome discussion thread because they will be read by more people. For technical support, you can post in the Technical Support sub-forum, or use the Contact Us link at the bottom of every page.
- Where should I post: In order to make a more productive discussion that is easy to find, it is important to consolidate all information on a specific topic into a single discussion thread. Therefore, prior to creating a new discussion thread, search the forums to make sure the topic hasn't already been discussed. If there is an existing discussion thread, please add your post to it rather than starting a new discussion thread. The Similar Thread feature can show you if a similar thread already exists. If you find two threads that cover the same specific topic, you can post a link on the shorter thread directing people to the longer thread. That way, people who come across the shorter thread will know that they should post on the longer thread instead.
- How should I name my discussion 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?" More specific thread titles attract more productive replies and help result in more productive discussions. It's perfectly okay if your thread title is a complete sentence!
- Starting a discussion thread about a scientific paper: If you are starting a discussion thread about a specific scientific paper, you can read this explanation of how to title your discussion thread.
- Including a poll in your discussion thread: If you include a poll in your discussion thread, you can add a tag at the top of the thread with the word "poll". Simply click on the small pencil icon under the thread title and type in the word "poll". By doing this, your poll will show up in our list of polls.
- Following other users: If you would like to "follow" another user, you can read this explanation of following.
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. It includes:
The Long Covid Alliance is an international alliance of Long Covid organizations. It includes:
- Body Politic, a large support group for people living with Long Covid.
- COVID-19 Longhauler Advocacy Project, a more intimate Facebook support group for people living with Long Covid.
If you are living with Long Covid, you can also review our Summary of Existing Long Covid Discussions.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Symptoms and Diagnosis
To determine which of your symptoms may be consistent with ME/CFS, you can review the following documents:
- International Consensus Criteria (ICC) - An updated comprehensive set of diagnostic criteria, based upon the Canadian Consensus Criteria. It uses the term "Myalgic Encephalomyelitis" and discourages the use of the term "Chronic Fatigue Syndrome."
- Canadian Consensus Criteria (CCC) - A comprehensive set of diagnostic criteria for ME/CFS, agreed upon by top specialists.
- IOM Diagnostic Criteria - A basic set of diagnostic criteria that is much less detailed than the CCC or ICC, but is easier to understand. It encourages use of the term "Systemic Exertion Intolerance Disease" or SEID, instead of ME/CFS.
2020 ME/CFS Clinician Coalition Handout: Basics of Diagnosis and Treatment - A helpful document produced by the U.S. ME/CFS Clinician Coalition.
Finding a Doctor
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). Both types of doctors can be helpful, as long as the doctor is willing to listen to the patient and learn as they go.
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. If the doctor determines that you meet the criteria for a ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist. Be aware that specialists often have very long waiting lists, can be expensive, and unfortunately may not have any more helpful information than you might find here.
U.S. ME/CFS Clinician Coalition - This site provides doctors with information on the diagnosis and management of ME/CFS. It's very useful if you have a doctor who is willing to use it as a reference.
To look for a doctor in your area, you can look through a List of Doctors or you can ask for advice in our ME/CFS Doctors Sub-forum.
For Severe ME/CFS PatientsIf 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. If the doctor determines that you meet the criteria for a ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist. Be aware that specialists often have very long waiting lists, can be expensive, and unfortunately may not have any more helpful information than you might find here.
U.S. ME/CFS Clinician Coalition - This site provides doctors with information on the diagnosis and management of ME/CFS. It's very useful if you have a doctor who is willing to use it as a reference.
To look for a doctor in your area, you can look through a List of Doctors or you can ask for advice in our ME/CFS Doctors Sub-forum.
Roughly 25% of ME/CFS patients suffer from Severe ME/CFS and they often require specialized care. For basic information on what Severe ME/CFS is, see this resource from the 25% ME Group.
Supporting someone with Severe ME 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. The authors also provide an easier-to-read downloadable introduction, as well as an article written for the nursing profession.
A severe ME patient wrote a book about living with severe ME and shares her experience on a blog called Surviving Severe ME. For a thorough documentation of information related to Severe ME, you can try the MEpedia page.
And if you are currently bed-bound, you can connect with other bed-bound people in our Living Life from a Bed sub-forum.
Getting Disability BenefitsSupporting someone with Severe ME 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. The authors also provide an easier-to-read downloadable introduction, as well as an article written for the nursing profession.
A severe ME patient wrote a book about living with severe ME and shares her experience on a blog called Surviving Severe ME. For a thorough documentation of information related to Severe ME, you can try the MEpedia page.
And if you are currently bed-bound, you can connect with other bed-bound people in our Living Life from a Bed sub-forum.
U.S. Social Security Disability Insurance (SSDI) - PR member nyanko_the_sane has created a discussion thread called SSDI Resources of Interest with links to resources and information about the U.S. government's Social Security Disability Insurance system, including useful application tips.
U.S. 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 SomeoneU.S. 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 need to talk to someone faster than by posting here in Phoenix Rising, there are some options described in:
If you just need to talk to someone: Phone/chat/email support available to patients and carers.
ME/CFS in Your Country
If you just need to talk to someone: Phone/chat/email support available to patients and carers.
ME/CFS in Your Country
We have discussion threads for some countries. If you can't find a discussion thread for your country, start one!
France, Spain, Germany, Brazil, Japan, China, Denmark, Sweden, Norway
Patient Tips on Testing and Potential Treatments
France, Spain, Germany, Brazil, Japan, China, Denmark, Sweden, Norway
Patient Tips on Testing and Potential Treatments
Hip is a patient and member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions and covers potential treatments: Hip's Roadmap for Testing and Treatment
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)."
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 - "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)."
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. 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.
Welcome again and best wishes for your 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. 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.
Welcome again and best wishes for your health!