As of 2022, unfortunately, there are no conventional, available drug therapies in any country for ME/CFS.
The few specialist ME/CFS doctors that exist in some countries have their own treatment protocols, with variable results. Patients who cannot find a specialist must work with their regular doctor to seek treatment for their individual symptoms. Many patients experiment on their own.
Bear in mind that what works for one patient may well not work for another. ME/CFS presents in different ways in different people, and some scientists suspect that ME/CFS may turn out to be several diseases that, for now, are under a single diagnostic umbrella.
Warning 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.
—MEAction
There was a prominent psychiatrist-run clinical trial called the “PACE trial”, an $8 million study that was designed to justify the use of GET and CBT in ME/CFS patients. It used faulty science and questionable data manipulation to achieve its intended objective.
A great article by the science writer Julie Rehmeyer describes some of the bad science behind this “PACE trial”. The article also covers an independent re-analysis of the data underlying the “PACE trial”. The following 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.
—Julie Rehmeyer
Treatments to Alleviate Symptoms
Despite the fact that there are no conventional, available drug therapies to cure ME/CFS, many patients find that some therapies can indeed reduce their symptoms.
Occasionally, people find that their symptoms are reduced by these therapies to the point where they feel that they are in remission, or even cured. Sometimes this positive effect is short-lived and the patient then relapses back to their previous state. But sometimes, the positive effect is sustained, and the patient’s quality of life remains improved.
The list of such therapies that patients use to reduce their symptoms is very long, and it is important to remember that what works to reduce symptoms for one patient may not work for a different patient.
To get an idea of the types of therapies that patients use to reduce symptoms, you can take a look through some of the following discussions from our patient discussion forum:
Anti-inflammatories:
Vitamin D:
Vitamin B12:
Methylation:
N-Acetyl-Cysteine (NAC) or Glutathione:
Someone told me that NAC can worsen the “methyl-folate trap”. Is that true?
Choline:
Ribose:
Alpha-Lipoic Acid (ALA):
Selenium:
What is the safest form of supplemental selenium? Is it seleno-methionine or methyl-seleno-cysteine?
Herpesvirus antiviral drugs:
Low-dose Naltrexone (LDN):
Abilify (aripiprazole):
Saline infusions:
Compression stockings: