Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management, 2021, Bateman et al

Medscape Trending Clinical Topic: Chronic Fatigue Syndrome

quote:
Recently published consensus recommendations on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), along with interest in its connections with long COVID, resulted in this week's top trending clinical topic. A week after the National Institute for Health and Care Excellence (NICE) delayed publication of updated guidance on ME/CFS, outraging a coalition of charities, the 23-member US ME/CFS Clinician Coalition published consensus recommendations. The document was published in Mayo Clinic Proceedings and is the culmination of work that began with a summit held in March 2018.

 

I personally have found sedating tricyclics (amitripytline or trimipramine) very useful. The latter has guaranteed me 8-10 hours sleep per night; when I was on the former, maybe an hour less. Compare that to around 5.5 hours a night before I started taking them (and 4 hours a night when I briefly tried an SSRI). I would find it difficult not to deteriorate if I was only getting 5.5 hours sleep a night. Also unlike many sleep medications I haven’t had to increase the dose over time despite taking them for over 25 years.

It also helps me with various types of pain (headaches, TMJ pain, IBS pain, muscle pain) and I believe makes me less light and noise sensitive. I know other people who have found this type of drug useful.

The guidance doesn’t mandate its use, just mentions it as a possibility for some symptoms which I think is reasonable. Clinical trials take a lot of work to organise so I don’t blame these supportive doctors for not arranging trials of this or other medications mentioned. But certainly more clinical trials would be great.

 

@Dolphin - thanks for the comment.

I agree we absolutely need clinical trials. But getting what we need takes money, an engaged medical community and academic centers, and to really scale up, pharma.

NIH has previously said they require the mechanisms and subtypes to be defined before they will fund trials. But you could also do trials based on what's being used clinically and design them to help elucidate the mechanism

And in the past, pharma has said they need better clarity on how to diagnose patients, how to assess outcomes, and also greater involvement of clinicians and academic centers.

The scope and visibility of Long COVID may help.

 

Amitriptyline (Ami) and nortriptyline (Nor) both give me tachycardia at very low doses. Ami raised my heart rate to 150 beats per minute, and Nor raised it to 135 beats per minute. It's annoying for me because doctors expect both Ami and Nor to be well tolerated. So when I say they give me tachycardia they assume I'm lying and am after something to get me high so they just dismiss me.

Edit : The tachycardia problem is a known side effect and it is listed in the Patient Information Leaflet as such.

 

Merged thread. This is the same paper now published in a journal.

Abstract
Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS.

Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. These problems are of increasing importance because after acute COVID-19, a significant percentage of people remain ill for many months with an illness similar to ME/CFS.

In 2015, the US National Academy of Medicine published new evidence-based clinical diagnostic criteria that have been adopted by the US Centers for Disease Control and Prevention. Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS.

This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.

https://www.sciencedirect.com/science/article/pii/S0025619621005139

 

These papers are helpful, but do we need a new one every six months?

 

We do. Every time something like this comes out is a new chance more people will take note of the updated info. Also it will be helpful if these messages will at some point be more prevalent than the ubiquitous 'meh behavioural issue just therapy&exercise already' crap that is still basically *everywhere*.

I'm going to have a look at the article now

 

I’ve a long (currently 50-tweet!) thread on this on Twitter in case it’s useful for anyone:

 

I made 58 bite-size extracts from this document in case it is of interest to anybody (some people on Facebook liked it)

https://threadreaderapp.com/thread/1443310978821656581.html