Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation, 2026, Grach et al

[forestglip]

Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation

Stephanie L. Grach, Jaime Seltzer, Michael R. Mueller, Chris A. Aakre, Lasonya T. Natividad, Donna K. Lawson, Ravindra Ganesh, Ryan T. Hurt

PURPOSE
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem neurologic disease characterized by profound fatigue and decreased functional capacity, postexertional malaise, and unrefreshing sleep, along with cognitive impairment and/or orthostatic intolerance. Its prevalence has risen exponentially with the COVID-19 pandemic. Pharmacologic therapies have been used successfully by ME/CFS specialists but may be underused by the general medical field.

METHODS
To assess this potential practice gap, we retrospectively analyzed the records of 571 patients with an ME/CFS diagnosis referred to our ME/CFS specialty clinic in Minnesota during 2018-2022. We ascertained medications that had already been tried at the time of consultation and also ascertained supplement use.

RESULTS
With the exception of medications primarily used for pain and anxiety, use of pharmacotherapy for ME/CFS symptom management as proposed by specialists was limited. Overall, 68.3% of patients had had at least 1 medication potentially prescribed for ME/CFS; the most common were serotonin-norepinephrine reuptake inhibitors, gabapentin, and tricyclic antidepressants. A slightly larger share of patients, 72.2%, reported having taken at least 1 dietary supplement; the most common were vitamin D, vitamin B12 and B complex, and fish oil.

CONCLUSION
Our findings suggest that potentially helpful medications for ME/CFS are being underprescribed in the general medical field and that patients may resort to supplements to manage symptoms. Better education of clinicians about available treatment options and treatment guides may improve management of this debilitating disease.

Web | DOI | PDF | Annals of Family Medicine | Open Access

 

[Utsikt]

Pharmacologic therapies have been used successfully by ME/CFS specialists but may be underused by the general medical field.

This is what they say about medications:

ME/CFS experts have prescribed various medications for symptom management. Many are summarized in expert statements such as those developed by the US ME/CFS Clinician Coalition and the International Consensus Panel or discussed in review articles related to ME/CFS or long COVID.8,9,14-19

Recent studies have emerged in particular on the use of low-dose naltrexone, aripiprazole, and pyridostig- mine in ME/CFS.20-23 Knowledge about these options is not widespread, however. This is likely due to a combination of factors, including but not limited to little coverage of this topic in medical training pertaining to ME/CFS and comorbid conditions.24,25

Medication sensitivity also presents a common barrier to medications when they are tried, deterring both patients and clinicians from pursuing additional treatment. ME/CFS specialists generally recommend comparatively lower doses than standard followed by gradual titration, col- loquially referred to as the “start low, go slow” strategy.8

So they have no evidence of efficacy, but still claim that the medications are underused.

 

[Felis Catus]

Yeah, the abstract left me wondering what do they suggest. Table 2 (too big to screenshot) in the paper lists same old same old treatments...

 

[Hutan]

CONCLUSION
Our findings suggest that potentially helpful medications for ME/CFS are being underprescribed in the general medical field and that patients may resort to supplements to manage symptoms. Better education of clinicians about available treatment options and treatment guides may improve management of this debilitating disease.

It's a shame that the abstract conclusion calls for educating clinicians to use these unevidenced treatment options, but makes no mention of the need for trials to determine if in fact these medications are of any use.

 

[Holinger]

Dr. Chris Aakre is an internist at Mayo from the Integrative Medicine department. This and his promotion of central sensitization theory doesn’t fill me with evidence based confidence re medication. But is probably a better option than the psycho behavioural model at Mayo on offer.

 

[ahimsa]

... but makes no mention of the need for trials to determine if in fact these medications are of any use.

To be fair, I did see this in the "Need for Education" section (near the end):

There has been a rapid acceleration in ME/CFS and related research with the rise of long COVID, accompanied by increasing use of symptom-focused therapies as outlined in the expert resources and Table 2.

Research is beginning to support use of these clinical options in ME/CFS and/or long COVID, but additional real-world studies and randomized control trials in ME/CFS are greatly needed.

I agree that this statement may not be strong enough but at least they do say that more evidence is needed. (unless I'm completely misinterpreting this?)

 

[Hutan]

I agree that this statement may not be strong enough but at least they do say that more evidence is needed.

I think it matters what makes it to the abstract. The single most important thing to say about current medication use in ME/CFS is that research is needed to clarify whether commonly prescribed medications are useful.

The medications and supplements identified in our study and the above discussion represent options for ME/CFS symptom reduction; more research is needed to identify disease-modifying treatments and, ultimately, curative therapies.

That statement in the Ongoing Research section makes it sound as though the medications and supplements they list in their tables are reasonable options for symptom reduction.


This is what they say about CoQ10 in Table 3.

Most studied supplement in ME/CFS; supplementation increases levels and improves symptoms, especially cognitive fatigue, sleep disturbances, and impaired quality of life.74,76-78

See the review of CoQ10 that I did here. It is certainly true that there are quite a few studies of CoQ10 for ME/CFS and related conditions. But, it is not true to claim that the body of evidence suggests that it improves ME/CFS symptoms. It is just not reasonable to make those claims - an unbiased review of the literature does not support it. It seems that the authors of this paper take claims in abstracts at face value. Edit to add - the references are only to papers that made positive claims. The papers with null results are not referenced.

There are some good things in this paper, such as the recognition that ME/CFS can be a consequence of Covid-19 infections, and some implied concern about the high rate of anti-depressant prescriptions. But, people with ME/CFS deserve better than this paper and the unevidenced medical care that it sounds like this Mayo Clinic is providing.

The observed pattern of medication use does not align with our specialty clinic’s initial approach to ME/CFS, which typically focuses first on fatigue, brain fog, and postexertional malaise, but is as expected based on the average knowledge of ME/CFS treatment in the general medical field.27-29 Our findings are also consistent with patient reports of clinicians being more likely to target mood concerns, as symptoms may often be labeled psychological before the actual diagnosis of ME/CFS is determined.30,31 In contrast, supplement use was more targeted toward improving energy and reducing inflammation, which better aligns with the medication strategies used in our clinic.

 

[Hutan]

A minor annoyance of mine is papers that report detail of their participants marital status when that status has no relevance to the subject of the paper.

Marital status

Married 326 (57.1)
Single 190 (33.3)
Divorced 35 (6.1)
Life partnership 8 (1.4)
Widowed 3 (0.5)
Separated 2 (0.4)
Chose not to disclose 1 (0.2)
Unknown 6 (1.1)

That report is from Table 1. There is no analysis in the paper of whether being married makes someone more likely to be using a particular medication than someone who is single. And, I think that absence of analysis is for a good reason. The marital status of the participants is just not relevant. There is no good reason to clutter up the paper with this information.

Similarly, there is highly detailed information on ethnicity/race - nine categories are reported. Perhaps the Mayo Clinic wanted this information for its clinic marketing plan, but this information, certainly at the level of detail presented, has essentially no relevance to the subject of the paper.

 

[Hutan]

First author is Dr Stephanie Grach, a doctor at Mayo Clinic. Clearly she is trying to help. But she needs to understand that blind acceptance of everything she has been told is definitely not helpful. People with ME/CFS will be going to extraordinary lengths in terms of effort and expense to get to see her, and they deserve a doctor who carefully scrutinises the evidence for interventions and is honest about the level of help that can be provided.

Dr. Grach received her M.D. degree from the University of Illinois College of Medicine in Rockford, IL, and completed her Internal Medicine residency at the Mayo Clinic in Rochester, MN. She obtained additional training at the Bateman Horne Center of Excellence for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Her primary interests include improving clinical, research, and educational aspects surrounding ME/CFS and related complex chronic diseases; additional interests include sexual health, general medical education, and diversity, equity, and inclusion in medicine.

This paper probably functions mostly as a marketing exercise for Mayo, aiming to pull in new clients with its claim of superior knowledge.

The observed pattern of medication use does not align with our specialty clinic’s initial approach to ME/CFS, which typically focuses first on fatigue, brain fog, and postexertional malaise, but is as expected based on the average knowledge of ME/CFS treatment in the general medical field.27-29 Our findings are also consistent with patient reports of clinicians being more likely to target mood concerns, as symptoms may often be labeled psychological before the actual diagnosis of ME/CFS is determined.30,31 In contrast, supplement use was more targeted toward improving energy and reducing inflammation, which better aligns with the medication strategies used in our clinic.

It's disappointing to see Jaime Seltzer of ME Action associated with a paper like this. We need our patient charities to be a lot more discerning about what they promote.