What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

Great thread

I'm in the process of putting together resources for health professionals as part of service development in Suffolk.

We've included links to NICE guidelines, primers, UK & International resources for health professionals, YT videos, Dialogues, a couple of links on severely affected, children & YP.

I'm struggling on the research section. I've included most of the suggestion in this thread.

I'd like to include some more research and it would be really helpful to have further suggestions for research papers which would be useful to include in the list.

 

Some links:

From:
https://forward-me.co.uk/16th-november-2022/

 

Thread: https://www.s4me.info/threads/lette...ple-with-severe-and-very-severe-me-cfs.30995/

 

Looks good:

https://www.mdpi.com/2227-9032/10/12/2438

What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults
by
Caroline Kingdon 1,*,Adam Lowe 2, Charles Shepherd 3 and Luis Nacul 1,4

https://www.s4me.info/threads/what-...hronic-fatigue-syndrome-in-adults-2022.30263/

 

That looks really good, doesn't it. Hopefully it will get read and used.

It reminded me of the thing I'd like inexperienced GPs to know about ME, and that's the importance of powered mobility aids for some of us. Using one was very strongly discouraged by my GP, on the basis that I would become "dependent".

I was already dependent, as I couldn't walk the 40 metres from the car park to the office without stopping for a rest or incurring pain and PEM, and I couldn't move around our large building as I needed to. Without my powerchair I'd have had to give up work in 2000; with it, I kept going until 2016. That's a hell of a difference, and my walking ability hasn't declined in the 22 years since I got it.

Powered mobility aids aren't right or necessary for everyone, but I'd want GPs to understand that they can be enabling in the management of PEM, not disabling because they undermine physical function by encouraging laziness. For most people, using and transporting them is way too much of a pain in the neck to bother with, if it's possible to avoid it.

 

This two-page letter (or one page if you exclude the references) might be worth circulating
https://mecfscliniciancoalition.org/

MESSAGE FROM THE COALITION ON LONG COVID:
Since 2020, we’ve been seeing people with Long COVID whose symptoms overlap with ME/CFS. We recommend you consider ME/CFS in the differential diagnosis of Long COVID, particularly when post-exertional malaise (PEM) is present. It is our clinical impression that early diagnosis and management of PEM and ME/CFS in these patients may be important in their disease trajectory. For more information, read the ME/CFS Clinician Coalition Letter.

 

This looks good based on a first read:
Doctors with ME: ME/CFS: Top Tips Handout for Doctors
https://www.s4me.info/threads/doctors-with-me-me-cfs-top-tips-handout-for-doctors.33254/

 

"Recommended ME/CFS resources for medical educators" from ME/CFS Medical Education Campaign UK

https://mecfsmeded.files.wordpress.com/2023/04/mecfs-learning-resources.pdf

A collection of papers, articles & audiovisual material

 

First time I recall seeing a one-page sheet like this:
"ME/CFS* IN PRIMARY CARE: Guide to Assessment and Management"

*Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

I'd prefer if professionals read a longer document but if one could only get them to read something short, perhaps it has a value.

From
https://anzmes.org.nz/anzmes-release-resources-for-primary-care/

Comment:
I would have a few minor quibbles with this.

I remain to be convinced that emotional trauma causes/triggers it but it could certainly trigger a relapse. And some patients do believe their illness was caused/triggered by emotional trauma.
Edited: though I think it’s possible stress at the time of an infection might increase the risk of developing ME/CFS

"Psychological intervention, such as CBT may be helpful for the psychological distress caused by having a long term chronic illness." Except that the so-called evidence-based CBT for CFS is more designed about curing the condition and encouraging graded activity.

 

We lack any reasonable evidence that appropriate psychological support is helpful in managing psychological distress specifically associated with having ME/CFS, though we can say on the basis of the published research that CBT aimed at treating/curing ME/CFS is at best ineffective and for some potentially harmful.

However, there is no reason to assume that people with ME/CFS requiring psychological support are no less likely to be helped by such support than those with any other condition, so it could be argued that people with ME/CFS should be entitled the same support as available to those with any other condition, as long as those providing such support are aware of the specific issues relating to ME/CFS such as PEM and sensory hypersensitivities.

Unfortunately NICE and others have jumped to the assumption that this should be CBT, rather than engaging in discussion about what support might be needed and how it might be best delivered. It may be that a portfolio of options are required ranging from providing basic information, through responding to distress resulting from the restricted life imposed by the condition to help for those that require it to significantly reducing their ongoing activity levels.

 

Merged thread
Best hand-out for GP’s clueless about MECFS—seeking recommendations

Any suggestions or please point me to existing threads.

Saw this from Bateman et al. — but maybe a bit on the heavy side. Thanks.

https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

 

There might be more than one answer, depending on what's needed from a particular consultation?

ME's not something that could really be dealt with in one appointment, so the approach would be influenced by whether it's for initial diagnosis, a fit note for work or education, relief of a particular symptom, exclusion of another illness, etc.

That's probably not very helpful, it's just the way I've always approached it. 10 minutes is barely long enough to talk about one issue, let alone all aspects of an illness.

 

I sent this one to a GP a couple of years ago:
Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians (degruyter.com)

There was also something from the Bateman Horne Center, but that's giving a 404 error now.

There was a download somewhere at the bottom of this page, but I don't know whether it's still the same one:
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | NHMRC

Haven't looked at any of these in detail, though, so I don't know how reliable they are.

And there's another thread on this around somewhere ...

 

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Grach et al
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

Thread: https://www.s4me.info/threads/diagn...onic-fatigue-syndrome-2023-grach-et-al.35540/

 

I've just read this and think it is useful potentially for this, although might also paste it elsewhere because rarely do I see an article that notes really well these issues of the impact of exhaustion on ability to make the most out of an appointment and indeed how what you see isn't what is 'going on' etc:

ME/CFS South Australia Inc: For The Provider: Working With Patients With ME/CFS And Their Caregivers (sacfs.asn.au)

It includes the following for example (I've stopped at the first 3 points but there are more that are as worthy and important):

Of course that first point also has important implications regarding explaining or acting as a warning regarding the 'subjective measures' - whether in official 'trials' or research or just someone naive as a layperson who is inadvertently gaslighting and kidding themselves it is working etc.