The results of the United States Center for Disease Control and Prevention (CDC) commissioned systematic review of the scientific literature on the treatment and management of ME/CFS are now available. The ‘Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ report is based on a literature search which occurred in January 2019 but was updated to February 2021 and, of the 5,525 relevant scientific articles identified, 687 were selected for review, representing 73 studies in 91 publications.
It must be remembered that
- This process evaluates the quality of scientific literature only and does not make recommendations or provide treatment guidelines (unlike the NICE guideline process).
- The findings and conclusions are those of the authors of the final report and do not necessarily represent the official position of the CDC.
- The CDC does not endorse specific studies included in the review.
In the words of the authors
This report summarizes the literature through February 2022, documents the gaps and limitations in published clinical trials, and provides evidence that well-designed trials of therapy for ME/CFS utilizing more current ME/CFS case definitions are needed. Evidence on effective treatments for ME/CFS remains limited. The strength of evidence supporting the use of graded exercise and CBT was low and the magnitude of benefits was small to moderate, with inadequate evidence in patients diagnosed with more current case definitions, limited reporting of harms, and inadequate evaluation in severely affected patients. Methodological and other limitations (imprecision, inconsistency, uncertain generalizability) preclude strong conclusions. Other therapies were not shown to be effective or require additional evidence to determine effectiveness.
Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome piii
It would be unusual if the report deviated much from NICE’s review of largely the same evidence or if it arrived at starlingling different conclusions – and indeed, it does not. On the use of GET and CBT, as a case in point, NICE found
There is no known cure for ME/CFS and non-pharmacological management strategies have been developed. Previous guidance has recommended the use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) but these have been controversial. The use of CBT and GET has been strongly criticised by people with ME/CFS on the grounds that their use is based on a flawed model of causation involving abnormal beliefs and behaviours, and deconditioning. Some people with ME/CFS have reported worsening of symptoms with GET and no benefit from CBT. Although research on pacing is sparse, this method of activity management is preferred by many people with ME/CFS. Interventions such as counselling, meditation and yoga are sometimes used to improve mobility and/or general wellbeing. Evidence here is also lacking.
ME/CFS Diagnosis and Management [G] Evidence reviews for the non-pharmacological management of ME/CFS
NICE guideline NG206
The CDC commissioned report reviewed the scientific literature to explore 3 topics, with the main findings being as follows
1. Prevalence of non-ME/CFS conditions of people presenting evaluation of potential ME/CFS
Mis-diagnosis of ME/CFS has long been a focus of discussion with researchers examined the records of every patient referred by local GPs to the Newcastle CFS/ME Clinical Service. The key finding was that 103 (40%) of referrals were eventually diagnosed with other conditions which could explain the concatenation of symptoms. The main alternative diagnoses in these patients were fatigue associated with a chronic disease (47% of all alternative diagnoses); a primary sleep disorder (20%); psychological/psychiatric illnesses (15%, most commonly, depression, anxiety and post-traumatic stress disorder); and cardiovascular disorders (4%).
The CDC commissioned report from the Pacific Northwest Evidence-based Practice Center, at Oregon Health & Science University, Portland, Oregon included the Newcastle Study in its review and found that four European studies of adult patients with fatigue, who were being assessed for an ME/CFS diagnosis, discovered that when ME/CFS was eventually excluded, the two most common non-ME/CFS conditions were psychiatric (15% to 51%) and various sleep disorders (6% to 30%), although one study found neurological (21%), neurodegenerative (15%), and immunologic (13%) conditions to be most common.
In contrast, a U.S. study found that the most common non-ME/CFS conditions were alcohol abuse (8.2%), anemia (sic) (6.1%), diabetes mellitus (16%), high C-reactive protein (20%), hypothyroidism (20%), depression (8.2%), urinary tract infection (8.2%), restless legs syndrome (6.1%), and substance abuse (6.1%)
2. What are the benefits and harms of diagnosing ME/CFS vs. non-diagnosis?
As there were no studies which covered this area, no benefits or harms could be identified.
3. What are the benefits and harms of therapeutic interventions for patients with ME/CFS and how do they vary by patient subgroups?
Exercise Therapy
Akin to the NICE process, most of the research assessed within the report was deemed to be ‘low strength’ from the findings of improved function after interventions versus inactive controls at the end of therapy and at post-intervention follow-up, to the PACE trial’s increased likelihood of improvement in fatigue, improvement in function, and recovery versus inactive controls.
Cognitive Behavioural Therapy (CBT)
Once more, the studies which did exist on the use of CBT were deemed to have a low strength of evidence.
Other Behavioural Approaches
Illness management, peer counseling, mindfulness-based cognitive therapy, and other self-management interventions studies were also examined and found to present insuffient evidence to determine their effects due to the sparcity of studies, methodological limitations and inconsisency of findings.
Medications
Low strength of evidence was cited against studies covering rintatolimod, immune modulators, antidepressants, corticosteroids, an acetyl-cholinesterase inhibitor, an alpha-adrenergic agonist, and other drugs.
Immunoglobulin G (IgG) infusions were not associated with improvements in fatigue or function versus placebo in 2 trials of adults (low strength of evidence).
Dietary Interventions, Herbal Supplements, or Homeopathy
There was insufficient evidence to determine the effects of dietary interventions/herbal supplements such as antioxidants, melatonin, and low-sugar/low-yeast diet.
Complementary and Alternative Therapies
Insufficient evidence was found to determine the effects of yoga, abdominal tuina (a type of massage), or distant healing.
