New US ME/CFS Clinician Coalition website

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:

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

'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'.

'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.

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.

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.

 

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.

 

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.

 

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:

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.

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.

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.

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.

 

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.

 

I agree.