• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Spoiler alert, don't wait standing up ....What chronic fatigue syndrome can teach us about 'long COVID'

YippeeKi YOW !!

Senior Member
Second star to the right ...
What chronic fatigue syndrome can teach us about 'long COVID'

For any of us still clinging wistfully to the hope that the prevalence of long-haul COVID patients will yield anything of value to our community, here’s the last three paragraphs of the above article from Live Science:

"Most medical schools do not teach students about ME/CFS. "The illness is often misunderstood and might not be taken seriously by some healthcare providers," the CDC states. Many physicians dismiss the symptoms of patients with ME/CFS if they can't find an obvious biological cause that explains them, Jason said. People who have long COVID are facing the same sorts of problems. "I can't tell you how many people have called me with long COVID and have said, if doctors can't identify some specific organic damage to them, people are dismissing their symptoms," he said. The emergence of long COVID could prompt physicians to take ME/CSF more seriously.

"Although there is no cure for ME/CFS, it's possible to treat — or at least attempt to lessen — some of the condition's individual symptoms, according to the CDC. For example, a person who has trouble sleeping could try over-the-counter sleep medications, talk with a doctor about prescription sleep medications, or see a sleep specialist, the CDC states, while admitting that with regard to sleep problems, "for people with ME/CFS, not all symptoms may go away." Still, the strategy of treating individual symptoms could also help people with long COVID, Jason said. "When you have people who are ill like this, they need a multidisciplinary approach to rehabilitation," he said. That can mean seeing a nutritionist, a pain specialist, a sleep specialist, or whatever health professionals treat the symptoms a patient is having, he said.

“It's essential that health professionals treating ME/CFS and long COVID patients understand that what might help most people gain more energy, such as working out 30 minutes several times a week, could actually hurt these patients, Jason said. Instead, "physical and occupational therapists can help these patients with learning how to pace, learning how to structure your life in a way that doesn't make you sick," Jason said.”

So the prevailing idea of a "cure" is a form or GET and/or “Learn to live with it” …. something most of us have been doing for a long time with varying levels of success and an on-going sense of abandonment and pissed-offed-ness ….
Last edited:


Senior Member
At least 3.7 million people in America are about to fall into our nightmare world of being the living dead.

The truly brutal thing about this to me is that it didn't have to be this way. 3.7 million lives ruined.

If only the medical profession would of listened to us.


Senior Member
80 years of the same bullshit and the best they have is to agree with patients that exercise is bad. 80 years of gaslighting and falsified studies and all of the symptom lists are missing something. It is one of the worst studied disease on the planet and its hard to justify why given how severe it can be. I remain convinced the entire thing is a crime against humanity committed by medicine and unfortunately for them when the researchers work it out the story about how they got here is going to really undermine trust in the health care profession, and rightly so.


Senior Member
In 2012 I showed my PCP one of the DNA results, regarding muscle weakness and presented him with a research publication. "Background: "The ACTN3 gene encodes the fast muscle protein α-actinin-3. The ACTN3 R577X polymorphism is a premature stop codon and results in absence of α-actinin-3 in 577XX homozygotes. The aim of this study was to determine the ACTN3 genotype in idiopathic inflammatory myopathies (IIMs). " https://pubmed.ncbi.nlm.nih.gov/22639897/
All he said was, "that is all nonsense".

Rufous McKinney

Senior Member
"physical and occupational therapists can help these patients with learning how to pace, learning how to structure your life in a way that doesn't make you sick," Jason said.”

yeah- which then leads to the obvious place wherein, who best understands the limits of any individual body?

that individual.

Not some doctor, not some PT.


I just wandered to the above link, and if I read that, it suggests I can cure my "viruses" by killing them off.

Now maybe thats possible. But its not very feasible. So far, I have found nobody to offer such treatment. The system has no interest in it. I may not even make it thru 2 side effects. Some side effects are enough to- end the treatment. One I call: choking.

Rufous McKinney

Senior Member
beginning of discovering ME/CSF was the guidelines from the Mayo Clinic

I'm hoping to try again on getting some decent testing, and I hope I can use this great guidance.

I need to just print out that table of key tests and then refuse to leave until I find a way to get the results.