This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/premier-cat-arena on 2020-10-15 03:52:04+00:00.

---

Hi guys! I’m one of the mods here and would like to welcome you to our sub! I know our sub has gotten tons of new members lately so I just wanted to say welcome and go over some basic stuff! I’ve seen a TON of misinformation going around on here so I wanted to clear up some stuff. Please read through the sub wiki, there’s tons of good info in there as well as an FAQ section . We get flooded with tons of the same questions that are answered in there.

Pacing: there is a great guide in the sub FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

This will likely involve not being able to work or go to school anymore unfortunately for most of us. It’s a devastating loss and needs to be grieved, you aren’t alone.

Diagnostic criteria: CDC site this gets asked a lot, but your symptoms do not have to be constant to qualify. Having each qualifying symptom some of the time is enough to meet the diagnostic criteria.

Some advice:

-Watch Unrest with your family/partner/whoever is important to you. It’s a critically acclaimed documentary available on Netflix or on the PBS website for free and it’s one of our best sources of information.

-do NOT push through PEM. PEM/PENE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion) is what happens when people with ME/CFS go beyond our energy envelopes. Here is an excellent resource from Stanford and the Solve ME/CFS Initiative it’s a toolkit for PEM avoidance. It has a workbook style to help you identify your triggers and keep your PEM under control.

Avoid PEM at absolutely all costs. If you push through PEM, you risk making your condition permanently worse, potentially putting yourself in a very severe and degenerative state. Think bedbound, in the dark, unable to care for yourself, unable to tolerate sound or stimulation. It can happen very quickly or over time if you aren’t careful. This disease is extremely serious and needs to be taken as such.

-absolutely do not do Graded Exercise Therapy (GET) or anything similar to it. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently.

-the most common triggers are viral infections though it can be triggered by a number of things (not exhaustive): bacterial infections, physical trauma, prolonged stress, viral infections like mono/EBV/glandular fever/COVID, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us know what our trigger was.

-the “brain rewiring/retraining programs” are all harmful, ineffective, and are peddled by charlatans. Gupta, Lightning Process (sometimes referred to as Lightning Program), ANS brain retraining, Recovery Norway, the Chrysalis Effect, The Switch, and DNRS (dynamic neural retraining systems), Primal Trust, CFS School. They also have cultish parts to them. Please do not do them. They’re purposely advertised to vulnerable sick people.

-this is not a mental health condition. It’s a very serious neuroimmune disease.

-we currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out theBateman Horne Center website for more info.

-most of us (95%) cannot and likely will not ever return to levels of pre-ME/CFS health. It’s a big thing to come to terms with but once you do it will make a huge change in your mental health.

-only see doctors recommend by other ME/CFS patients to avoid wasting time/money on unsupportive doctors

THINGS TO HAVE YOUR DOCTOR RULE OUT

Resources:

I’ve collected these resources over the past couple of years, and these are all of the best ones I’ve found.

.

This book was super helpful for my family and me to understand my illness:

This one has good guides in case need to be in the hospital etc but can also be helpful to help someone you love with understand your needs:

Edit: Some more sites to look through are: Open Medicine Foundation, Bateman Horne Center, ME Action, Dysautonomia International, and Solve ME/CFS Initiative. MEpedia is good as well. All great organizations with helpful resources as well

Edit 2: finding an ME/CFS specialist or getting on a waitlist for a well respected one is very important if it’s possible for you in the US. There are only a handful of them and most of us have to travel to see them or only do telemedicine. The biggest ones are: Bateman Horne Center in Salt Lake City; Center for Complex Diseases in Mountain View, CA; Stanford CFS Clinic, Dr, Nancy Klimas in Florida, Dr. Susan Levine in NYC. I know there a some more I’m missing but those are most of the big ones.

Edit 4/22/21: the new US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment was just released!

SPECFIC TESTING RECOMMENDATIONS

TREATMENT RECOMMENDATIONS