Medscape: "New Clinical Practice Guidelines, August 2018 Edition"

[ahimsa]

I saw this on the Medscape website today. I think it's just a summary of recent changes posted on CDC website but I'm not sure.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrom

Centers for Disease Control and Prevention (7/12/2018)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, debilitating disease with systemic effects. ME/CFS is characterized by reduced ability to perform pre-illness activities that lasts for more than 6 months and is accompanied by profound fatigue, which is not improved by rest.

A hallmark of ME/CFS is that symptoms can worsen after physical, mental, or emotional effort, a manifestation known as postexertional malaise (PEM). Patients with ME/CFS also have unrefreshing sleep.

Other common manifestations are orthostatic intolerance, cognitive impairment, and pain. As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS

Full article (may require Medscape registration/login) - https://reference.medscape.com/viewarticle/900291_5

 

[Hutan]

There's quite a bit to like in this brief guideline.

As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS.

While some patients and healthcare providers have reported improvement in ME/CFS after use of off-label or unlicensed medications, the efficacy of these medicines has not been tested in multiple, large, well-controlled clinical trials.

Helping patients get relief from symptoms and achieve improvement in quality of life are the main goals of treatment.

I'm not sure what happened to the last paragraph though - it seems to have been cut off mid-word.

Each patient’s program typically includes a combination of therapies to address symptoms, techniques to help patients cope, and strategies to ma

 

[Webdog]

I'm not sure what happened to the last paragraph though - it seems to have been cut off mid-word.

You'd think with 7 authors, someone would have noticed.

Agreed it's a very nice summary. Hopefully they will fix the cut-off ending. I'd like to share this with some doctors when it's corrected.

I sent quick notes to WebMD (ETA: and Medscape) editors. If they don't respond, I will send notes to the authors.

Edit: Still no response from editorial, so I will start contacting the 7 authors one by one until I get a response.

 

[Trish]

It starts very well, then vanishes mid word (strategies to ma...) at the crucial point of what I assume is 'strategies to manage ...'. So does it advise pacing, rest, activity management, GET??? Or is it just going to leave us with a vague 'manage symptoms' without saying how?

 

[Webdog]

Just spoke on the phone with one of the listed article authors (turns out he's an editor), Brian Feinberg. Brian said he would take care of getting it fixed and send me an email when it's done.

 

[Webdog]

Looks like the article has been fixed. The final sentence now reads: "Each patient’s program typically includes a combination of therapies to address symptoms, techniques to help patients cope, and strategies to manage daily activities."

 

[Andy]

anyone with a Medscape login had a look at their overview of CFS?

I understand you may prefer not to but Medscape logins can be had by anyone, it's a free sign-up.

 

[Andy]

there is also another link on 'CFS Link to T3 syndrome' that I can't get at without registering:
https://www.medscape.com/viewarticle/894601?src=refgatesrc1

This one is the same as discussed here, https://s4me.info/threads/medscape-cfs-linked-to-low-t3-syndrome-by-miriam-tucker.3261/

 

[Andy]

Selected excerpts from the CFS series of pages

Diagnostic criteria
A diagnosis of CFS requires the following three symptoms: [1 - this ref is to the IoM report]

• A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
• Postexertional malaise
• Unrefreshing sleep

At least one of the following must also be present:

• Cognitive impairment
• Orthostatic intolerance

Pathophysiology
CFS is a biological illness, not a psychologic disorder. The exact pathogenesis is unknown. Numerous mechanisms and molecules have been implicated....

Under Epidemiology

Patients with CFS experience loss of productivity and high medical costs that contribute to a total economic burden of $17-24 billion annually. [1]

Quoting this bit in full as it's less good

Prognosis
CSF has no cure, its symptoms can persist for years, and its clinical course is punctuated by remissions and relapses. One prospective study suggests that approximately 50% of patients with CSF can return to part-time or full-time work. [14] Longer duration of illness, severe fatigue, comorbid depression, and anxiety are factors associated with a poorer prognosis. [15] Good outcomes are associated with less fatigue severity at baseline, a sense of control over symptoms, and no attribution of the illness to a physical cause. [16] Despite the considerable burden of morbidity associated with CFS, there is no evidence of an increased risk of mortality.

References are
14 - Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis, 2014, Nyland et al, https://bmjopen.bmj.com/content/4/11/e005798
15 & 16 - The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review., 1997, Joyce J; Hotopf M; Wessely S, https://reference.medscape.com/medline/abstract/9093600

Diagnostic Considerations
CFS is a diagnosis of exclusion. The key diagnostic task is to differentiate it from other disorders that also have a fatigue component. CFS may be distinguished from other causes of fatigue based on the presence of cognitive dysfunction, which is absent in almost all other fatigue-producing disorders. Once a specific cause of fatigue has been diagnosed, CFS is excluded by definition.

Approach Considerations
CSF has no cure. Treatment is largely supportive and focuses on symptom relief. Large randomized controlled trials such as the pacing, graded activity, and cognitive behavior therapy: a randomized evaluation (PACE) trial and Cochrane reviews have recommended cognitive behavioral therapy (CBT) as an effective method for treating CFS in adults. [17, 18] However, the surveillance report in 2017 from the National Institute for Health and Care Excellence (NICE) evidence reviews recommend against CBT. [19] The Centers for Disease Control and Prevention (CDC) and the Agency for Healthcare Research and Quality (AHRQ) both have removed CBT as a recommended treatment for CFS because of insufficient evidence. [20]

Exercise Therapy
Exercise is not a cure for CFS. A 2017 Cochrane review evaluated exercise therapy for patients with CFS. The study found that patients felt less fatigued following exercise therapy and felt improved in terms of sleep, physical function, and general health. However, the authors could not conclude that exercise therapy improved the outcomes of pain, quality of life, anxiety, and/or depression. [21]

The PACE trial found that graded exercise therapy (GET) effectively improved measures of fatigue and physical functioning. [17] However, updates from the NICE guideline surveillance report in 2017 recommend against GET. The CDC and AHRQ both have removed GET as a recommended treatment. [20]

To date, no evidence-based interventions are available for the treatment of CFS.

All pages say they were updated Aug 9th 2018. Apart from the couple of uses of CSF when CFS is meant, and the prognosis bit, my scan through tells me that otherwise it's pretty much as we would want it at the moment.

 

[Keela Too]

However, updates from the NICE guideline surveillance report in 2017 recommend against GET. The CDC and AHRQ both have removed GET as a recommended treatment. [20]

Sure a load of stakeholders said GET should go, but NICE themselves haven’t yet changed their recommendation for GET. Sadly.

 

[Sly Saint]

A Revised Approach for Chronic Fatigue Syndrome | The Morning Report

Medscape

Published on Dec 12, 2018
Currently, chronic fatigue syndrome, which is now called myalgic encephalomyelitis syndrome or ME/CFS, has no cure. But a recent summit concluded that there is much we can do to improve patients' symptoms and quality of life. The multispecialty group endorsed the 2015 Institute of Medicine diagnostic criteria of unexplained fatigue with substantial functional impairment, postexertional malaise, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance.

 

[Webdog]

"the 2015 Institute of Medicine diagnostic criteria of unexpained fatigue with substantial functional impairment"

But the 2015 IOM (NAM) proposed diagnostic criteria actually say:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest

So, is it substantial functional impairment with fatigue (IOM), or fatigue with substantial functional impairment (Medscape)? These are not equivalent and the distinction is important.

Medscape is not alone in this. UpToDate, Healthwise, even Cort's recent blog characterize ME/CFS as primarily a fatigue disorder. But that is not what the IOM report says.

Here's how the CDC breaks down the first IOM ME/CFS diagnostic criterion:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (occupational, educational, social or personal life) that:
   1. lasts for more than 6 months
   2. is accompanied by fatigue that is:
      1. often profound
      2. of new onset (not life-long)
      3. not the result of ongoing or unusual excessive exertion
      4. not substantially alleviated by rest

Note that the CDC bolds functional impairment and places it first, but does not bold fatigue which is also under a subcategory.