Medscape CPD course: A Fresh Look at ME/CFS: Diagnosis and Management of a Multisystem Illness, Natelson et al.

Full title:
A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness

Target Audience and Goal Statement

This activity is intended for primary care physicians, nurses, nurse practitioners, and other healthcare providers (HCPs) involved in the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

The goal of this activity is to increase awareness of the symptoms, diagnosis, and management of ME/CFS.

Upon completion of this activity, participants will:

• Have increased knowledge regarding the
  • Impact of ME/CFS on multiple body systems
  • Symptom recognition of ME/CFS
• Have greater competence related to
  • Individualizing a treatment plan to manage symptoms associated with ME/CFS

https://www.medscape.org/viewarticle/964157

 

There are slides and a pdf download that can be accessed for free.

 

Interesting. I read through the authors first and as they were neuro (in pain and fatigue) and rehab I was wary. I don't know whether neuro in top US medical schools are captured by the 'functional' stuff that it seems the UK has, and whether that was unfair.

Anyway it seems genuinely in line with taking the condition seriously. I imagine there are some bits that others mightn't agree with or would want to look over carefully to do with POTS, MCAS being mentioned.

It has a good section on underlining the need for validation, and that it involves a attitude to be right from HCPs (not the box ticking, tweak a few words of the old stuff we see eg in BACME literature) and a fair section on common patient complaints/where things go wrong. Which is followed through with what seem like good points on making more effort with referrals for this patient population to ensure eg the person being referred to understands ME and so on

It's hard to read between the lines and easy to read into with just slides. I'm slightly hoping I'm not inaccurate in thinking this relates to that idea of 'patient admin load' because 'the system' is mentioned in a few slides as well, so they seem to be picking up on how throwing those who have ME into a system that isn't set up for them with all the added admin around both that and explaining ... well. It would be great if they are getting this across in a way that is well-accepted.

My one gripe was on the slide of what they could offer (I read carefully for where 'increases' etc might be snuck it but I'm assuming any mentions are 'fair' of exercises and really do relate to specific issues and severities) was the last section they'd put brain fog/social isolation as the joint title. And then just listed support groups and "talk therpay" which was ACT.

If this wasn't a mistake to have put brain fog in the title then they are misunderstanding the issue and cause. Most of us know that energy conservation - which they put under the fatigue title - is perhaps the first thing to be aware of, because cognitive symptoms are like physical symptoms worsened with exertion (both physical exertion and cognitive exertion also ). SO suggesting talking therapy is counter intuitive if that's the issue.

I think as well as giving cognitive fatiguability/fatigue/brain fog its own section, I think that it's a valid section thinking of the 'social isolation' but if they really want to get into the psychology of it (not the labelling form, or even clinical necessarily just understanding the situational) then its worth noting the fact that you also can't do activities like TV or reading as much and so on.

What I mean perhaps is there is room for, if done well and focusing on getting the MD to understand the quandary/no win people are placed in rather than just provide quick fixes (although I understand that is part of medicine) there probably is room for someone really, really good who is genuinely going to do the job well on it (talking to some old hands who had it a long time).

And in explaining the exhaustion someone might have trying to explain things in an appointment too. And why it 'isn't fog' - maybe I'm just a bit more conscious of how some take away interpretations since I had that phrase in Maeve's inquest about 'it being unusual for people with ME to have mental capacity because of brain fog'. The fear certainly is real in the UK, of assumptions being made etc and it would provide comfort to people if it was understood .

I've also seen enough posts here and done it myself about how we can make the most of appointments, particularly when we will be exhausted from travel or struggle with phone calls - so this could have been an opportunity on how to eg allow things to be sent before-hand, and to be aware of limiting how many direct, complex questions or at least give people the chance to answer them after the appointment by a different means if they do get exhausted etc.

But I'm nit-picking now really. It's deadly to start trying to do things right as they should do, because hopefully they'll take this as trying to polish and build on that because it is so important and not a bad start and way of doing it ie enthusiasm not criticism.