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.
 
Dolphin said:
Some more to consider:
https://meassociation.org.uk/2022/1...ps-in-the-uk-channel-islands-and-isle-of-man/

Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!

What your GPs surgery has received in this mailing
  1. A covering letter from Dr Charles Shepherd (see opposite).
  2. ME Medical magazine: which explains the launch of the DHSC initiatives.
  3. The MEA Summary of the NICE Clinical Guideline on ME/CFS.
  4. The MEA booklet: Diagnosing ME/CFS.
  5. The MEA booklet: ME/CFS & Long Covid: Similarities and Differences.
  6. Information about the CPD training module for healthcare professionals about ME/CFS from StudyPRN.
  7. Information about the CPD training module for healthcare professionals about the NICE Guideline on ME/CFS from MIMS Learning.
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Some links:



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From:
https://forward-me.co.uk/16th-november-2022/
 
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:
standard_compressed_SARS-CoV-2_without_background-39x40-1.png
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.

 
It's nearly really good. But there are some problems, mostly in this paragraph:
Before the COVID-19 pandemic, an estimated 90% of cases with ME/CFS were undiagnosed (9,10). It is
likely that this number remains true – or may have even risen – with the addition of Long COVID.
Historically, projected rates of recovery from ME/CFS have been close to 5% (11). These statistics are
complicated by universally low recognition and diagnosis of early- or mild-stage ME/CFS, as well as lack
of longitudinal studies. This could have major implications in patient outcomes as studies demonstrate a
distinct difference in immunologic signature approximately three years after disease onset (12).
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I'm not sure what 'projected rates of recovery' are, but rates of recovery from ME/CFS are relatively high in the first year, even if you don't count any illness that doesn't last for 6 months after onset.

'Universally' low recognition and diagnosis of early- or mild-stage ME/CFS is a bit too absolute.

The 'distinct difference in immunologic signature approximately three years after disease onset' is from the Hornig Lipkin paper. It wasn't that convincing to begin with, not least because I'm not aware of ME/CFS symptoms changing at the three year mark. Also, I'm not aware of the findings having been replicated. The Message only gives the Hornig et al paper as a reference, so to say 'studies demonstrate' seems to overstate things.
 
55413A33-BC93-4869-A431-2D9ACF1B01CA.jpeg
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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.
 
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Tom Kindlon said:
"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.
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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.
 
I think a one pager is absolutely the best way to go as an initial communication to try to engage a broad audience of GPs/medical professionals. People are so busy/bombarded by new information.

more detailed information should be provided as reference for those who need more when they actively engage with trying to understand ME
 
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 ...
 
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):

Some Useful Facts About ME/CFS Patients

  1. A patient who has had ME/CFS for a long time will have adjusted to a new normal. Thus, responses like “I’m okay, thanks,” need to be interpreted as expressing what is normal for them and not what would be okay for someone who suddenly contracted this illness and was reporting on it the next day.
    Similarly, if patients are asked to record symptoms on a chart, they are likely to note their level of exhaustion at a 3 when to anyone else it would be a 7.
  2. The effects of exertion on a patient are often not apparent until a couple of days later. Thus, a patient who has rested up to come to an appointment will be at the highest end of their functioning and not demonstrating their usual functioning.
  3. Patients with ME/CFS often do not have the energy to prepare questions for their appointment. Thus, it is important to ask them or a caregiver to note questions as they occur and to bring in these notes to the appointment.
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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.
 
Is there a short succinct resource that tells GPs how they can effectively support patients who have an established MECFS diagnosis - not necessarily just with their MECFS but as a whole patient with any other potential health need? Without any speculation about what causes MECFS or its symptoms.

Something with tangible suggestions?

a brief review of the thread didn’t lead me to find anything suitable.

Alternatively are there any threads or even sources of information outside of S4ME where people have discussed what they think makes a good GP [for someone with a diagnosis of MECFS)?
 
Probably not suitable for a mailout as I’m not sure there is a neat pdf or similar version but perhaps suitable for a webpage with information for GPs:


Canada The Centre for Effective Practice has published new clinical tools to "support family physicians and primary care nurse practitioners in recognizing, assessing, diagnosing and managing FM, ME/CFS, and POTS in adult patients."


https://cep.health/clinical-products/fm-mecfs-pots/


https://www.s4me.info/threads/canad...-guidelines-on-fm-me-cfs-and-pots-2024.40916/
 
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