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

[Barry]

I was happy to see that anxiety and depression are no longer listed as common comorbidities in the new version, instead it lists secondary anxiety and secondary depression as common comorbid conditions. A small but very positive change!

Can you explain the difference for me please .

 

[Anna H]

Can you explain the difference for me please .

Absolutely .
When symptoms of anxiety or depression are secondary, it means another, primary disease, is causing them. This can either be because of how the disease, it's severity, symptoms and consequences for your life impacts the person on a psychological level, or because of a primary illness that has anxiety as one of it's symptoms.
In both cases the anxiety is just a part of and not dominating the whole picture of symptoms.

An example of the latter would be hypothyroidism, which typically includes anxiety as a symptom. Thyroid status is one of the things psychiatrists routinely check to make sure symptoms of anxiety aren't caused by an underactive thyroid, for example.

Getting a cancer diagnosis for example, can lead to acute anxiety because of the potential mortality, the fear and worry of living with the disease and going through treatment during a long period of time can then lead to a more long-lasting anxiety. But the cancer is the primary diagnosis and the anxiety has developed as a result of the cancer.

Saying that the anxiety and/or depression often experienced by ME patients is mainly secondary instead of primary, to me acknowledges the severity of the disease and the suffering of patients.
It also counteracts the misconceptions of ME being psychosomatic, in that anxiety and depression ensues the development of ME, not the other way around, and that people that fall ill with ME are no more prone to anxiety and depression than the general population.

We of course already knew all this, but it's nice to see renowned ME clinicians make this discernment.

And in our case I'm thinking it's not just the disease and how it wrecks your life, but the stigma, lack of support and health care, harmful treatments, gaslighting etc that can cause anxiety and depression, which must also be considered secondary as it's ultimately a consequence of the disease.

Edit: clarity

 

[Barry]

Absolutely .
When symptoms of anxiety or depression are secondary, it means another, primary disease, is causing them. This can either be because of how the disease, it's severity, symptoms and consequences for your life impacts the person on a psychological level, or because of a primary illness that has anxiety as one of it's symptoms.
In both cases the anxiety is just a part of and not dominating the whole picture of symptoms.

An example of the latter would be hypothyroidism, which typically includes anxiety as a symptom. Thyroid status is one of the things psychiatrists routinely check to make sure symptoms of anxiety aren't caused by an underactive thyroid, for example.

Getting a cancer diagnosis for example, can lead to acute anxiety because of the potential mortality, the fear and worry of living with the disease and going through treatment during a long period of time can then lead to a more long-lasting anxiety. But the cancer is the primary diagnosis and the anxiety has developed as a result of the cancer.

Saying that the anxiety and/or depression often experienced by ME patients is mainly secondary instead of primary, to me acknowledges the severity of the disease and the suffering of patients.
It also counteracts the misconceptions of ME being psychosomatic, in that anxiety and depression ensues the development of ME, not the other way around, and that people that fall ill with ME are no more prone to anxiety and depression than the general population.

We of course already knew all this, but it's nice to see renowned ME clinicians make this discernment.

And in our case I'm thinking it's not just the disease and how it wrecks your life, but the stigma, lack of support and health care, harmful treatments, gaslighting etc that can cause anxiety and depression, which must also be considered secondary as it's ultimately a consequence of the disease.

Edit: clarity

Sorry, yes I already understood the bit about secondary conditions, but thanks very much for clarifying anyway. The bit I did not understand was that I assumed comorbidities were secondary by implication anyway, but I'm clearly wrong on that.

 

[Anna H]

Sorry, yes I already understood the bit about secondary conditions, but thanks very much for clarifying anyway. The bit I did not understand was that I assumed comorbidities were secondary by implication anyway, but I'm clearly wrong on that.

Oh, sorry I misunderstood!
Exactly, the standard definition of comorbid conditions doesn't imply causality, (although more recent uses sometimes refer to conditions being related in some way, so your assumption is understandable).
Even though comorbidities can sometimes be caused by a primary diagnosis, the term refers simply to the co-occurence of two or more physical or psychiatric conditions.

The primary diagnosis is the illness that's most severe/causing the most symptoms and/or disability, and it can in turn become a comorbid condition, for example if the condition improves and another disease develops that takes precedence in its effects on daily life, symptoms and physical function.

"The term "comorbid" has three definitions:

1. to indicate a medical condition existing simultaneously but independently with another condition in a patient (this is the older and more "correct" definition)
2. to indicate a medical condition in a patient that causes, is caused by, or is otherwise related to another condition in the same patient (this is a newer, nonstandard definition and less well-accepted).[2]
3. to indicate two or more medical conditions existing simultaneously regardless of their causal relationship. "

https://en.m.wikipedia.org/wiki/Comorbidity
Hope that wasn't TMI.

 

[Barry]

Oh, sorry I misunderstood!
Exactly, the standard definition of comorbid conditions doesn't imply causality, (although more recent uses sometimes refer to conditions being related in some way, so your assumption is understandable).
Even though comorbidities can sometimes be caused by a primary diagnosis, the term refers simply to the co-occurence of two or more physical or psychiatric conditions.

The primary diagnosis is the illness that's most severe/causing the most symptoms and/or disability, and it can in turn become a comorbid condition, for example if the condition improves and another disease develops that takes precedence in its effects on daily life, symptoms and physical function.

"The term "comorbid" has three definitions:

1. to indicate a medical condition existing simultaneously but independently with another condition in a patient (this is the older and more "correct" definition)
2. to indicate a medical condition in a patient that causes, is caused by, or is otherwise related to another condition in the same patient (this is a newer, nonstandard definition and less well-accepted).[2]
3. to indicate two or more medical conditions existing simultaneously regardless of their causal relationship. "

https://en.m.wikipedia.org/wiki/Comorbidity
Hope that wasn't TMI.

No it wasn't TMI, just right in fact. Many thanks for that.

 

[Sly Saint]

MCG Pediatric Podcast
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
June 1, 2020
Join adolescent medicine specialist Dr. Robert Pendergast and MCG pediatric resident Dr. James Davis as they discuss Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

What is ME/CFS?

How to make the diagnosis?

What comorbid conditions need to be considered?

How do we help patients with this uncommon but debilitating condition?

 

[Medfeb]

Merged thread

New US ME/CFS Clinician Coalition website

The US ME/CFS Clinician Coalition has released a website for medical providers with information to help them deliver better care for people with ME - https://mecfscliniciancoalition.org

The website announcement is below and attached.

Please consider sharing with your clinicians & networks.

====================================
Introducing the US ME/CFS Clinician Coalition Website September 16, 2020

The US ME/CFS Clinician Coalition has launched a new website to provide clinicians with high quality information on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The site can be accessed at MECFSClinicianCoalition.org

A significant proportion of people with ME/CFS have not been properly diagnosed and have struggled to access appropriate clinical care. Many medical providers have reported uncertainty about how to diagnose and care for ME/CFS patients. In 2015, the National Academy of Medicine (NAM) established new clinical criteria focused on the core features of the disease to improve diagnosis. While there are not yet specific diagnostic biomarkers or evidence-based treatment guidelines for ME/CFS, there are many actions a medical provider can take to reduce symptom burden and improve quality of life for people with ME/CFS.

The goal of this website is to help medical providers deliver better care. The website provides information about ME/CFS and the best clinical diagnosis, treatment, and management practices used by experts in the field. It also provides links to information on key comorbidities, disability, work and school accommodations. There are links to various medical education courses, including CMEs, plus key reports and research efforts. Additional information will be added as it becomes available.

The US ME/CFS Clinician Coalition is a group of US ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. In addition to their clinical practices, Coalition members are active in ME/CFS research. They have authored primers on clinical management, developed medical education courses, and served on the NAM panel that authored the 2015 report on ME/CFS. You can learn more about the Coalition and contact them through their website.

If you are a medical provider, please visit the Coalition website. You will find expert guidance to help you deliver the most informed and effective care.

The US ME/CFS Clinician Coalition

 

[Hutan]

It's really good that the clinicians have made this website, not least because it makes the assumptions that guide clinical decisions transparent. I'm going through the content to work out if this is a resource I would like to direct clinicians in my country to.

About ME/CFS page
There's lots of great stuff, making it clear that this illness is common and debilitating and that deconditioning or fear of activity are not the causes. I'm going to focus on the problems here:

Yet, ME/CFS remains highly misunderstood and all too often stigmatized by the medical community, leaving those suffering from this illness frequently feeling abandoned or ignored by traditional medicine.

Traditional medicine? That's usually contrasted with 'modern medicine'. I don't think 'traditional' was the adjective the writers wanted here.

is a chronic, complex, debilitating, multi-system illness

'Complex'. What does 'complex' add to multi-system? If the writers meant 'as yet poorly understood', then 'complex' does not really mean that. The illness may be incredibly simple, once we understand it - we just don't know. It is used by many clinicians as meaning 'biopsychosocial' - as in 'the psychology of the patient plays a significant part in the illness'.

Patients experience a substantial reduction in their daily functioning and can experience a broad range of symptoms including profound fatigue, post-exertional malaise, unrefreshing and disordered sleep, cognitive impairment, orthostatic intolerance, flu-like symptoms, sensory sensitivity, amplified pain, recurrent headaches, and gastrointestinal disturbances.

'Amplified pain?'. There are studies that show that the pain thresholds of people with ME/CFS are no different to those of healthy people. We have pain, yes. Amplified pain sounds a lot like the unevidenced ideas of central sensitisation as the cause of ME/CFS.

Some patients may go through cycles of overexerting and crashing while others may have learned to reduce or change activities to minimize crashes.

At first , this might seem ok. But some patients may be holding down a job, because there is no one to provide for them, or because they have people depending on them to earn a living. Parents may make efforts to look after children. They may have made a conscious decision to push themselves sometimes and crash into bed in the other times. And who is to say that it is wrong for them in their circumstances? There was a recent study, I forget who by, that seemed to find that repeated PEM did not cause a worsening of the illness. Now one study doesn't prove that, but I don't think we t have multiple studies proving the opposite. And, even if there were, it may still be a reasonable decision for someone to make, to push enough to cause PEM sometimes. This sentence has a judgemental tone.

Little research has been done on the natural progression of ME/CFS but it appears that over time and without proper diagnosis and treatment, some patients will improve, some will stay the same, and some will worsen.

True enough, but it implies that the situation is different for those patients who do receive a proper diagnosis and treatment. While things may be easier for people with a diagnosis of ME/CFS and treatment for pain or whatever, I don't think we have any basis to say that the diagnosis and treatment will influence whether they improve, stay the same or worsen. I'm sure clinicians want to feel that they are helping, and no doubt they are, but aside from heading off suicide and additional health conditions created by poverty and hopelessness, I don't think we have any evidence to say that ME/CFS treatment changes the course of the illness.

 

[Hutan]

The picture from the first page. This woman with her immaculate eyebrows and polished nails and a serene smile does not look very troubled by a 'chronic, complex, debilitating, multi-system illness'. I know getting the right picture is hard, but maybe some thought could be given to getting a more suitable image.

 

[Hutan]

I find the site frustrating. It has some great parts and is potentially a really useful resource - a brief description of the illness and treatment and a curated selection of links for medical professionals. But there is quite a lot of material that is not supported by evidence. EDS and MCAS are presented as proven co-morbidities throughout the website, with links to further information. 'HPA Axis dysregulation (low normal or flattened cortisol curve)' is another identified co-morbidity - there's no good body of evidence for this idea.

I don't like the idea that the core features have to be present at least 50% of the time - I think that will just confuse doctors new to ME/CFS. Does that mean someone has to have fatigue 50% or more of the time? PEM 50% or more of the time? If someone is pacing well, they may not have much fatigue or PEM - it's just that they probably can't work or do much housework, and only shower twice a week to achieve that.

Some of the linked resources contain misleading information e.g. the 2014 Primer for Clinical Practitioners. Many of the linked resources have been reviewed on the forum.

A minor point is, in the list of treatments is '; and avoidance of problematic foods and meditation'. I doubt that the intention is to suggest meditation should be avoided - maybe it was meant to be 'avoidance of problematic foods and medication; and meditation'?

Unfortunately, I can't recommend the site. I don't think it adds more than some of the pretty good sources of information like the CDC website and Emerge's website. And, it has the potential to confuse medical professionals.

 

[obeat]

There was a recent study, I forget who by, that seemed to find that repeated PEM did not cause a worsening of the illness. Now one study doesn't prove that, but I don't think we t have multiple studies proving the opposite. And, even if there were, it may still be a reasonable decision for someone to make, to push enough to cause PEM sometimes. This sentence has a judgemental tone.

I wholeheartedly agree with @Hutan about this. Episodes of "controlled PEM" in my experience never caused deterioration.

 

[adambeyoncelowe]

I suspect the 'amplified pain' thing is about allodynia, and perhaps even migraine and muscle pain during PEM? I.e., there are times when pain gets worse. It's not very clear, though.

 

[Trish]

A few comments on the introductory pages. I haven't read the detailed stuff yet. I think this is a good idea in theory, but, like others, I find some areas of concern.

'What is ME/CFS' front page:
I like the addition of 'profound' to fatigue, and the fact that it's listed last in the core symptoms. I like that PEM is stated as the core defining symptom, but find this description inadequate:

The hallmark and seemingly pathognomonic symptom is “post-exertional malaise” (PEM), in which baseline symptoms are exacerbated by physical or cognitive exertion, often for a prolonged period after the exertion has been completed.

I'm not sure what they mean by 'baseline symptoms'. I think many of us describe PEM as including additional symptoms, such as headache, sore throat, pain, nausea, dizziness, sensory sensitivity, that we may not experience all the time, in addition to exacerbation of the symptoms we have all the time. And there is no mention here of it being often delayed, nor of it leading to a significant loss of ability to function. And what does a prolonged period mean? Hours, days, weeks?

I think, rather than giving half a decription, which is misleading, it would be better to just list it at this stage and wait to define it more fully later, as they have also done.

'The Nature of ME/CFS'
I agree that 'amplified pain' makes no sense to me. I have pain in my muscles all the time that increases with use and takes ages to recede when I rest, but I have no idea what they mean by suggesting it is 'amplified'. Is that a medical term?

The description of PEM is better in this section.

But this section is problematic, as others have said.

Some patients may go through cycles of overexerting and crashing while others may have learned to reduce or change activities to minimize crashes. For some patients, even basic activities of daily living can result in PEM.

It implies the cycles of 'overexerting and crashing' are something we can control if we 'learn'. As has been said, some of us have no options but to function this way, as we have a living to earn and/or caring responsibilities. I would like some acknowledgement of this. It makes me feel that all those years of pushing (and crashing) in order to keep working and supporting and caring for my family were somehow my failure to 'learn' to control myself better. I'm sure that's not what is intended, but that's how I react to it.

Little research has been done on the natural progression of ME/CFS but it appears that over time and without proper diagnosis and treatment, some patients will improve, some will stay the same, and some will worsen.

Implies with treatment the situation is different - I have seen no evidence to support this. This sentence needs to be more realistic. I would delete 'without proper diagnosis and treatment'. Surely the key message here is, no matter how much you help relieve some of the symptoms to make life more bearable, however well you pace, there is no research evidence that you can get around the key problem of PEM.

Even with these approaches, patients may experience relapses, requiring an adjustment to the management plan as needed.

This bothers me. It makes it sound too easy, and as if the clinician can work some magic to set things right again, like adjusting the dose of inhaler for an asthmatic, or insulin for a diabetic. However much of a 'management plan' you have with this illness, you can't get around the fact that ME places an unpredictably shifting limit on activity and punishes with PEM when real life forces us to exceed it.

They suggest doctors can help by teaching how to pace, and with symptomatic treatments for a list of symptoms including 'cognitive dysfunction'. Is there any such treatment? I don't know of any.
And it assumes patients can tolerate the drugs they prescribe. My personal experience is that my drug tolerance is very low, with most giving me side effects more unpleasant or concerning than the symptom they are treating, so I am left with doing my best to distract myself from my symptoms and enduring.

So my overall comment on the introductory pages - it makes it sound as though doctors can do more than they can in controlling ME/CFS. There's a feeling of blandness despite stating that most can't work etc. Maybe it's the pictures that add to this feeling. They are too pretty. No one looks sick.

 

[Dx Revision Watch]

...But there is quite a lot of material that is not supported by evidence. EDS and MCAS are presented as proven co-morbidities throughout the website, with links to further information. 'HPA Axis dysregulation (low normal or flattened cortisol curve)' is another identified co-morbidity - there's no good body of evidence for this idea. . .
Unfortunately, I can't recommend the site. I don't think it adds more than some of the pretty good sources of information like the CDC website and Emerge's website. And, it has the potential to confuse medical professionals.

I share your concerns, Hutan. I haven't read the entire site content because I stopped as soon as I saw this:

ME/CFS is often accompanied by various comorbidities. Identifying and treating these comorbidities can decrease the overall symptom burden and increase a patient’s quality of life. These resources provide information on some of the most common and clinically impactful comorbidities.

with links to a MCAS org and two EDS organisations. I decided I could not comfortably flag up this site on Twitter or other platforms.

I was also concerned to note that Dr Ilene Ruhoy, MD (Center for Healing Neurology) is one of the members of this clinical coalition. It was Dr Ruhoy who was making certain claims around ME and CCI surgery and who authored this blog post (the text of which was edited slightly after I and others raised concerns with her):

https://www.centerforhealingneurology.com/2019/11/17/blog-cci-surgery-a-neurologists-perspective/

"A subset of the population of those that suffer with hypermobility, mast cell activation, and dysautonomia will develop what has become to be known as myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS). A small percentage of these patients develop worsening and progressive symptoms thought to be due to cranio-cervical instability (CCI) or atlanto-axial instability (AAI)..."

the report went on to describe her detailed observations of a CCI operation.

 

[Yessica]

Thank you for all that went into this, I appreciate the thought and effort of putting together something like this. I was excited to see it because I'm going to be seeing a new primary care doctor and was hoping this would be a good thing to share with them and with others.

I'm limited, so only pursued a piece of it, which caused me concern and reading others comments here verified there's more to be concerned about too.

I was wondering about the 2 below (quoted) statements. The significantly.

Due to being on the severe side and other complications I haven't been able to pursue much in the way of treatments. I have reactions to many things and medications, which makes a lot a no go for me.

Significantly reduce hasn't been my experience of what I've been able to try or what I've read or heard from other ME patients that have sought various or many treatments from the ME doctors. (Though I also hear of and know some ME patients are a little to much better from treatment/s too.)

Could a qualifying word or words be added to make those statements more accurate? What is written sounds like it's a given.

(Bolding below is mine.)

"However, while there is no cure, medical providers can help to
significantly reduce the burden of symptoms and improve a patient’s
functioning and overall quality of life using some of the approaches
described on this site. Even with these approaches, patients may
experience relapses, requiring an adjustment to the management plan as
needed."

"While there are no definitive diagnostic tests or FDA approved
treatments specific to ME/CFS, there are no shortage of interventions
a clinician can make to improve patient quality of life and
significantly reduce the overall symptomatic burden of ME/CFS."

 

[Trish]

Can I just add, if any of the clinicians involved are reading this, that I appreciate the need for some guidance and the effort that has gone into this. And if I were in the USA I would hope to see a doctor like Dr Bateman who seems to have some genuinely good ideas about how to help her patients cope.

But it worries me if they stray beyond the evidence.

 

[mango]

There was a recent study, I forget who by, that seemed to find that repeated PEM did not cause a worsening of the illness. Now one study doesn't prove that, but I don't think we have multiple studies proving the opposite. And, even if there were, it may still be a reasonable decision for someone to make, to push enough to cause PEM sometimes.

I feel very strongly that it's massively important to highlight the risk that (severe or repeated) PEM might lead to a long-term or permanent worsening of the illness.

It's the one thing I really really wish I had known from the very beginning.

In my experience, PEM can definitely cause permanent deterioration. From what I've read on forums etc over the years, lots and lots of pwME share my experience. So many of us have been harmed for life by repeated PEM caused by for example GET, iatrogenic harm due to discrimination, having been forced to try to work even though we were way too ill to do so, having to repeatedly overexert ourselves in order to fulfill our own basic needs like food and hygiene when we aren't getting the practical support that we need, etc etc etc.

I very strongly feel that an explicit and formal warning about PEM possibly causing a permanent worsening of the disease is absolutely essential. Not just repeated PEM, but even just one-time overexertions might cause a permanent worsening too.

If a website like this were to ignore or downplay the risks of PEM, how would that help us better advocate for ourselves? How would that help protect us from iatrogenic harm, or from demands by doctors and/or the social insurance agency that we have to try and work, exercise etc even though it causes PEM?

The importance of trying to minimise the effects of PEM by pacing etc is one of the main messages, isn't it? Undermining that by claiming that repeated PEM won't cause any lasting harm could have catastrophic consequences.

 

[Dx Revision Watch]

...Traditional medicine? That's usually contrasted with 'modern medicine'. I don't think 'traditional' was the adjective the writers wanted here.

Agree. "traditional medicine" is a very odd choice of term.

The WHO's inclusion of a new Chapter for Traditional Medicine for ICD-11 is described thus:

"This supplementary chapter refers to disorders and patterns which originated in ancient Chinese Medicine and are commonly used in China, Japan, Korea, and elsewhere around the world. This list represents a union set of harmonized traditional medicine conditions of the Chinese, Japanese, and Korean classifications..."

 

[Trish]

I feel very strongly that it's massively important to highlight the risk that (severe or repeated) PEM might lead to a long-term or permanent worsening of the illness.

It's the one thing I really really wish I had known from the very beginning.

I agree.

 

[Andy]

ALL DOCTORS SHOULD GO TO THIS WEBSITE FOR ME INFORMATION!

We are thrilled to share that The US ME/CFS Clinician Coalition has launched a beautiful website to provide clinicians with expert information on the diagnosis and management of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

The website includes the basics of clinical management, diagnosis and management, comorbid conditions, and resources on helping people with ME access disability accommodations. This is truly a valuable resource.

We encourage you to SHARE the website with your medical providers to best inform them about ME/CFS. *We have provided a simple email template for you below!*

https://www.meaction.net/2020/09/18/all-doctors-should-go-to-this-website-for-me-information/

Other articles available include "3 LIFE-CHANGING WAYS OF COMBING YOUR HAIR!" and "YOU WON'T BELIEVE THIS THING THAT IS COMPLETELY BELIEVABLE!". (No, not really, I just dislike the ALL CAPS TITLES THAT ARE USED and the sensationalist language but that's just my personal opinion.)