US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

@Medfeb :party::emoji_clap:
I affirm the feedback @Ravn has given. The main issue for me is the possibility of missing mild cases when there is the most opportunity for a rapid diagnosis and appropriate support to preserve QOL. Great summary! :thumbup:
Also @Trish makes a good point. Flu-like symptoms never sat well with me. I’ve never had a flu feel like this. And with PEM I rarely have anything more than a mild sore throat, I don’t get a cough, I don’t get nasal congestion. And some members of the ME community much more fall into the muscle weakness, muscle paralysis and numbness symptoms which were perhaps more a feature of a Ramsay definition? Again with the potential for confounding subgroup issues.
 
Medfeb said:
those who are housebound are severe and those who can leave the house some but not work are moderate.
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Hi, I just wanted to mention a small thing with your terminology.

There are different levels of housebound, just like there are different ways of using wheelchairs (can’t transfer without assistance/device, can transfer but not walk, ambulatory wheelchair user, etc.)

Disability is not a binary thing, and it’s needed to acknowledge the spectrum.

Obviously there are some people who don’t leave their house at all due to symptoms but might not stay in bed constantly (or even the vast majority of the time).

But the CMS definition of homebound includes people who leave their house (including on a fairly regular basis). It must be difficult and the reasons for leaving home should be important/basic/not delegateable (such as medical, family, religious services, adult day care, haircuts). This is essential for doctors to know because it might qualify patients for services.
https://www.cms.gov/apps/glossary/search.asp?Term=homebound&Language=English
https://www.medicareinteractive.org...ome-health-services/the-homebound-requirement

I have had doctors tell me I am not homebound because I show up at the doctor occasionally and this is absolutely incorrect. Attending doctor visits is very hard for me and it increases my symptoms and reduces functioning. But I cannot survive without SSDI, and I cannot keep SSDI without an ongoing medical record. Additionally the tradeoff for migraine medication is also worth it.

But home visits would be much better, just this isn’t offered.

All my visits as an inpatient once or twice a year supplemented with video visits and monthly/quarterly home lab draws would also be fine, just there’s no way I know of to fund home labs without needing a nurse, PT, or OT on an ongoing basis. Also the hospital doesn’t seem to be able to arrange food I can eat (last time I was in hospital it took them 3 days to send a dietitian and then get the information to the kitchen, by which time I was discharging). And my doctors seem to think yearly labs are enough? I don’t feel this is sufficient.

I qualify for Medicaid LTSS, which means Medicaid evaluators think I would qualify for a nursing home (but they provide care at my dwelling). But I show up at the doctor.
 
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As far as flulike symptoms, I always thought that was most intended to describe the infectious disease meaning of “malaise:” the sort of sick and weak feeling that accompanies some infections.

Nonetheless, I can get body aches, shortness of breath, and cough. Other people describe nasal troubles like a form of sinusitis with their ME (that worsens in conjunction with crashes).

I get sore throat and I thought that went more with colds but apparently it can go with flu also.
https://www.cdc.gov/flu/symptoms/coldflu.htm

Oh yeah and I can get chills also.
 
NelliePledge said:
@WillowJ whats CMS?
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Ah sorry. Acronyms.

Centers for Medicare and Medicaid Services.

The government agency in charge of US Medicare (healthcare for old and/or disabled people, especially hospital and clinic based services but including "home health" which is skilled nursing care usually after a hospital visit, physical therapy, occupational therapy)

and Medicaid (healthcare for poor people including hospital and clinic based services, and for poor disabled people, including home and community services: someone to help with bathing, house chores, dressing, rides to the doctor, organization, and so on)

home and community services is also known as long-term services and supports (LTSS, the other acronym)
 
I volunteer for OMF as a translator, and was recently told that a lot of individuals and organizations have been asking for a translation of this guideline.
OMF asked if I thought it was worthwhile to translate it into Swedish.
I'm honestly not sure?

I agree with both the pros and cons made in this thread, but also with some of the critique seen on Twitter.

I'm just wondering if it is in the Community's best interest to spread this?
And as was mentioned before, who is it aimed at?

I think IACFS/ME's primer and its summary are very good, and the summary is already available in a Swedish version.
I get that this is an easier read, but are there any potential pitfalls to assisting the spread of this guideline?


Any thoughts on this?

Edit: for grammar and clarity
 
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Dolphin said:
Have you or anyone a link to a summary of this in English? I don't recall seeing it and am very interested in relatively short documents to educate doctors and the like.
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Now that you mention it, I'm not entirely sure if the Swedish summary is a translation of an English summary or just a summary written in Swedish?

You can order the primer and a Swedish summary from the Swedish patient organisation.........maybe I got it wrong?:thumbsdown:

So sorry if I misinformed you, maybe my head is to foggy for me to be posting right now....:confused:

I must check this out for myself as well!
 
Samuel said:
@Dolphin

my notes say:

mepedia references it as:

Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6

iime link is http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf

also a commonly used link: http://www.hetalternatief.org/ICC primer 2012.pdf

both should be in english.
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Thanks. That’s actually a different document from the IACFS/ME Primer. Both are good in my opinion but am not aware of summaries in English, at least not ones that might look reasonably professional to doctors.
 
thanks @Dolphin i read that as icc. why did my brain do that?

the first version of the iacfs/me one said infections were not an issue and it recommended exercise for severe.

i was told it has gotten better but have not looked at it, given that the first one failed to understand the disease.
 
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Samuel said:
thanks @Dolphin i read that as icc. why did my brain do that?

the first version of the iacfs/me one was horrible imo as it said infections were not an issue and it recommended exercise for severe.

i was told it has gotten better but have not looked at it, having had a bad taste in my mouth from the first one. i guess i thought why are they doing to do any better given taht they failed to even udnerstand the disease in thef irst one.
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OK. I remember giving feedback on an earlier version. I think others might have also possibly following a thread on another forum. Perhaps that helped as I recall being much happier with the 2014 edition. Of course, there is a possibility my expectations were lowered.
 
Sly Saint said:
My main criticism would be that the 4 'core symptoms' are inadequate.

In it's description of PEM it says 'typically delayed and prolonged exacerbation of symptoms' but apart from fatigue and sleep disturbance' it gives no indication of what the 'symptoms' are.

Prolonged headaches, sore throats, noise and light intolerance and lack of balance/dizziness (which may or may not be part of orthostatic intolerance) should feature somewhere; or even just mentioning 'flu-like symptoms' would be more accurate. I hate to say it but, it wasn't nicknamed 'Yuppie flu' for nothing.
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as mentioned by @Mithriel on a different thread:
quote from Dr Lily Chu.
"I wish to re-emphasize that post-exertional fatigue is not equivalent to post-exertional malaise. As described in the NAM report, PEM is not only increased fatigue following activity but also involves exacerbation of other symptoms, like muscle/joint pain, problems sleeping, headaches, cognitive dysfunction, sore throats, tender lymph nodes, and flu-like feelings (1). Furthermore, PEM can be delayed by hours to days relative to the triggering event and last hours, days, and even longer."
 
Thanks @wigglethemouse for posting. I was just coming in to do that.

I apologize but I had never got back to this thread to answer your questions. Someone recently pointed me back to it

As far as previous comments made in this thread...
Just to be clear - I don't speak for the clinicians so this is just my perspective

One of the points above was about excising the word fatigue from the document - I get it and believe the word continues to cause problems and misperceptions, including now with Covid. But the referenced sentence is a shorthand of the first of the IOM criteria - substantial impairment accompanied by fatigue.

I agree with the point about the range of symptoms being exacerbated by exercise - particularly that flu-like symptoms, tender lymph nodes, etc are exacerbated post-exertion is unusual and thus significant. The new version does not explicitly highlight that but it states that PEM can exacerbate one or all of the symptoms, which have been previously listed.

The new version lists additional symptoms including "flu-like symptoms, susceptibility to infections, visual disturbances, and others which speak to some of the earlier comments. I think there might have been some different viewpoints about including flu-like symptoms. I know some patients may not experience that but others do.

The only point made about the spectrum of severity is in the key facts and this does not address the points that @WillowJ made about the spectrum of homebound.

I agree that we need more doctors in the field and more studies on which to base recommendations. But the questions are two fold - a) how do we go from where we are to where we need to be and b) how do we improve the care patients receive - and reduce the stigma and mistreatment - in the meantime. Beyond that, personally, I'm very concerned that these clinicians will soon retire - and we will lose the decades of knowledge they have acquired.

I'm sure I missed something - let me know and I'll try to address.
 
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