1. Guest, the 'News in Brief' for the week beginning 10th January 2022 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Resources for Health Professionals' started by ahimsa, Aug 26, 2021.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    1,534
    Location:
    Oregon, USA
    Published today in the Mayo Clinic Proceedings:

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

    Lucinda Bateman, MD, Alison C. Bested, MD, Hector F. Bonilla, MD, Bela V. Chheda, MD, Lily Chu, MD, MSHS, Jennifer M. Curtin, MD, Tania T. Dempsey, MD, Mary E. Dimmock, BA, Theresa G. Dowell, DNP, MPT, Donna Felsenstein, MD, David L. Kaufman, MD, Nancy G. Klimas, MD, Anthony L. Komaroff, MD, Charles W. Lapp, MBME, MD, Susan M. Levine, MD, Jose G. Montoya, MD, Benjamin H. Natelson, MD, Daniel L. Peterson, MD, Richard N. Podell, MD, MPH, Irma R. Rey, MD, Ilene S. Ruhoy, MD, PhD, Maria A. Vera-Nunez, MD, MSBI, Brayden P. Yellman, MD

    August 25, 2021

    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 Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.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.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

    The paper has been published in Science Direct in November 2021. See this post.
     
    Last edited by a moderator: Nov 15, 2021
    Liessa, EzzieD, Solstice and 26 others like this.
  2. Hutan

    Hutan Moderator Staff Member

    Messages:
    17,624
    Location:
    Australia
    I've just quickly skimmed this, but I thought it was good, and better than I was expecting. Especially being published in the Mayo Clinic Proceedings, given that the Mayo Clinic has not been a good place for a person with ME/CFS to get care.

    I think it's worth looking beyond the abstract; it might be useful for personal and community advocacy.
     
    Liessa, Dolphin, EzzieD and 24 others like this.
  3. Starlight

    Starlight Senior Member (Voting Rights)

    Messages:
    102
    I was pleasantly surprised by how good this article is. I can't think of anything in it that I would fault. This is thoroughly researched and one I would consider very worthwhile sending to GPs and doubters. There is great detail in it and I so wish that this was what we were waiting to come from NICE.
     
    Liessa, Dolphin, Gecko and 9 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    4,817
    Location:
    Norway
    Medscape New Recommendations Address ME/CFS Diagnosis and Management by Miriam Tucker

    - New consensus recommendations address diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with advice that may also be helpful for patients with lingering symptoms following acute COVID-19 infection.
     
    Liessa, Dolphin, Solstice and 11 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,307
    Location:
    UK
    short youtube video

    "Dr. Lucinda Bateman, an Internal Medicine Physician from Salt Lake City, UT, reviews this consensus statement appearing online early and in the November 2021 issue of Mayo Clinic Proceedings, where the authors review the key diagnostic criteria for this debilitating post-infection condition to aid clinicians in recognizing the signs and symptoms for this hard to diagnose disease. These include impaired function, post-exertional malaise, unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. She notes people experiencing long COVID syndrome may double this patient population making it essential for clinicians to recognize, diagnose, and treat these patients as early as possible. Available at: https://mayocl.in/37wG94D"

     
    Liessa, Dolphin, diwa and 8 others like this.
  6. Perrier

    Perrier Senior Member (Voting Rights)

    Messages:
    747
    Yes, the article is very good.

    However, the section on pacing is tricky: they write: "Once patients are effectively pacing without triggering PEM, some patients may be able to engage in very short periods of activity to increase their stamina. This must be individualized for the patient’s level of severity and specific triggers of PEM and must be done in such a way that it does not provoke PEM. Even for those patients who can tolerate such activity, the expected level of improvement may be small and is not seen in all patients."

    Some patients are in almost constant PEM. Brushing teeth can bring it on, trying to pull on a sweater, or any other activity. For some severe patients this whole pacing business does not result in much "increase" to their stamina. Yes, they do say that level of improvement may not be seen in all patients. But pacing works for some but not for many others.
     
    Liessa, Dolphin, Sean and 11 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,307
    Location:
    UK
    I don't think it's a question of whether pacing 'works' as a means of improvement rather than not-pacing can cause further deterioration.
     
    Liessa, Dolphin, Sean and 16 others like this.
  8. Perrier

    Perrier Senior Member (Voting Rights)

    Messages:
    747
    How can the severe or very severe not pace? Beset by so many horrid symptoms, the body naturally slows down, lies down, sits down, and does not push--it can't with this torrent of symptoms, and then OI on top of it. My daughter used to call it the Immobilisation Treatment--after any ridiculously tiny movement, she would lie still, like a statue and wait for the symptoms to subside--though never entirely pass. I often thought of Sleeping Beauty when I would see her lie like that, alabaster white.
     
    Liessa, shak8, lycaena and 12 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    2,492
    The more severe the more pacing becomes rather prioritising, deciding which of what are normally considered daily essentials are the ones necessary for survival, decisions like how long going without washing or changing your clothes makes that more important than eating or drinking something.
     
    Liessa, Dolphin, dratalanta and 14 others like this.
  10. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,298
    Location:
    Somerset, England
    To me, this consensus statement shows an attitude of care and compassion towards PWME. This brings into stark contrast what is currently happening in the UK with the Royal Colleges and the NICE guidelines, where preventing patient suffering seems to be lost to the Royal Colleges own agenda and the interests of a few professionals.
     
    Liessa, shak8, Dolphin and 19 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    10,508
    A lot of this is good. Some of the pharmacological recommendations are bad and unevidenced though.

    It would have been nice to hold this up as support for the NICE guideline but being full of pharmacological stuff that is uncritical does not help sell the sensible bits on non-pharmacological care.
     
    cfsandmore, FMMM1, Grigor and 11 others like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,151
    Location:
    UK West Midlands
    If they are ok with including amitryptiline etc and gabapentin etc for sleep they haven’t even mentioned melatonin which at least doesn’t have sedative hangover. Is there any thorough evaluation anywhere of the benefits and downsides of these drugs specifically in ME/CFS?
     
    Liessa, alktipping, Wyva and 4 others like this.
  13. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    1,534
    Location:
    Oregon, USA
    I don't know, but here's a general comment from the Medscape article :
     
    Liessa, Dolphin, alktipping and 8 others like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    9,151
    Location:
    UK West Midlands
    As an influential group maybe this should be prompting them to get some evaluation done so it’s more than Group throwing stuff at the wall to see what sticks. Even if it is ‘what we’ve been doing for years’. That is a weak argument as we’ve been discussing elsewhere. Maybe I’m coming across as excessively critical but I have had experience where I believe sedation due to taking pregabalin was a contributing factor to me having a fall down a step and getting bad sprains and worsening of ME.
    I do believe all the care stuff is good but not sure enough objective consideration has been given to the medication mentioned.
     
    Liessa, alktipping, Hutan and 7 others like this.
  15. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    5,411
    It doesn't work for mild or moderate either. A persons improvement has nothing to do with pacing, pacing prevents harm. A patients improvement simply occurs on its own.
     
    Liessa, Mark Vink, Amw66 and 9 others like this.
  16. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,962
    Location:
    Canada
    Maybe it's the Mayo brand, because we know eminence matters, but this is the first time Cheung has made such a clear mention of ME/CFS. Cheung is technically the lead Canadian researcher on Long Covid. Technically in that there is no actual program, or funding, she's basically just the go-to expert on the issue.

    I have to say I'm seeing a clear increase in prominent long haulers and some researchers recognizing the ME overlap. More obvious over the last 2 weeks or so.

     
    Liessa, Dolphin, JoanneS and 10 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,962
    Location:
    Canada
    And speaking of Mayo, hopefully the overlap also gets recognized there and Mayo stop their barbaric approach to chronic illness, or at least get on the way to it.

     
    Liessa, Dolphin, alktipping and 8 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,307
    Location:
    UK
    alas this change is not countrywide:

    Norton Healthcare

    "Treating chronic fatigue starts with getting the right diagnosis. About 90% of those with chronic fatigue aren’t diagnosed."

    https://nortonhealthcare.com/news/chronic-fatigue-treatment/

    @dave30th
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,962
    Location:
    Canada
    Don't know who this is but many followers, journalist and MD:



    Also: amazing twitter handle.
     
  20. Andy

    Andy Committee Member (& Outreach when energy allows)

    Messages:
    15,170
    Location:
    Hampshire, UK
    Trial By Error: While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS

    "Two weeks ago, NICE abruptly announced that it was putting the brakes on publication of its new ME/CFS guidelines—a move precipitated by fierce opposition from key members of the GET/CBT ideological brigades in the British medical establishment. Then last week, Mayo Clinic Proceedings, a well-known journal, published a different set of ME/CFS guidelines that—like the unpublished NICE document—specifically advises against the traditional GET/CBT approach.

    The article, developed by a group of specialists known as the US ME/CFS Clinician Coalition, is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.” The clinicians make it clear that no treatments have been shown to be curative. Instead, they focus on advice for managing and treating symptoms like orthostatic intolerance, cognitive dysfunction, pain and sleep dysfunction. That the article appears in a publication affiliated with the Mayo Clinic represents something of an ironic twist. The Mayo Clinic has been pretty persistent in offering GET/CBT-type rehabilitation approaches for ME/CFS, despite years of appeals from patients. I hope in future Mayo patients bring a copy of this article to their appointments."

    https://www.virology.ws/2021/09/01/...s-publish-new-clinical-guidelines-for-me-cfs/
     
    Liessa, Louie41, Dolphin and 12 others like this.

Share This Page