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

Dolphin

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I thought I would brainstorm on this as there may be documents I’ve forgotten about or was never aware of.

They don’t have to be long: one- and two-page documents can also be useful.

I’m personally interested in English-language documents (the discussion could still be of interest to people in countries where English is not a primary language as perhaps documents could be translated). And of course the discussion is not just for me so people could always mention documents in other languages.

We are doing a mail-out to GPs in the next few weeks which doubles as an opportunity to tell them about a free webinar for GPs we are running next month.

We might run a similar event next year so items we can’t include this year could be included next year. We are in the fortunate position that we have saved up some funds. We usually hold a number of public meetings which can be expensive but haven’t in recent years because of the pandemic.

I suppose in theory long Covid documents could also be included if they were relevant to ME/CFS.
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Edited to add: I just realised this thread could also be very useful for material to add to our website which badly needs updating.
 
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Dolphin

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Can you post one of the things youre sending along with the cover letter?
Thanks for your interest.
Here's the current draft covering letter (minus a few identifying bits of information):

I’m writing to let you know that we’ve organised <webinar details>

Among other things, it has been observed internationally that Covid -19 can lead to a post viral fatigue syndrome in a significant number of patients so we thought it might be topical to discuss that. It is expected that a significant number will then go on to develop ME/CFS (1) and indeed some have already been diagnosed.

You might also be interested in this free UK online resource which offers one hour of CPD credit: "ME/CFS Clinical Cases: Presentation and knowledge assessment" https://bit.ly/3awDOJt i.e. https://www.studyprn.com/p/chronic-fatigue-syndrome

GPs are the first point of contact for patients and therefore often the most important people in establishing the diagnosis of ME/Chronic Fatigue Syndrome and in advising on management. But many doctors do not feel confident in diagnosing or managing the condition (2,3).

We are therefore also enclosing information to help busy doctors diagnose and manage ME/CFS.

(i) The National Institute for Health and Care Excellence (NICE) published new guidelines on the diagnosis and management of ME/CFS towards the end of 2021. They can be read at https://www.nice.org.uk/guidance/ng206 . Probably the biggest change is that graded exercise therapy is no longer recommended. We recognise that many GPs will not have the time to read the full NICE guidelines so we are including a four-page document, "NICE ME/CFS 2021: Q&A summary for GPs". It is also available here: https://bit.ly/3u0JAg6 i.e. https://doctorswith.me/wp-content/uploads/NICE-GP-QA.pdf .

(ii) We are also including a longer document “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management” (18 pages including four pages of references and the like). This was written by the US ME/CFS Clinician Coalition and was published in the prestigious Mayo Clinic Proceedings journal last August. The author team are some of the most respected and experienced practising physicians in the field in the US. It is also available here: https://mayocl.in/3znlPPu i.e. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext . It is a consensus document.

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Both the US ME/CFS Clinician Coalition ( https://mecfscliniciancoalition.org/ ) and Doctors with ME ( https://doctorswith.me/ ) have websites that are well worth checking out.

Clinicians who may previously have been reluctant to make the diagnosis may wish to consider the evidence from studies such as a CDC population-based study which found that delayed diagnosis appears to be a risk factor for poor prognosis (4). This prompted the CDC to spend over $4 million on a two-pronged awareness and education campaign aimed at both clinicians and also the general public.

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Thank you for taking the time to read this.

Please do not hesitate to contact if you want further information or further copies of the enclosed material.

X
<Title>


References:

1) Komaroff AL, Bateman L. Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front Med (Lausanne) 2020; 7: 606824. DOI: 10.3389/fmed.2020.606824

2) Bowen J, Pheby D, Charlett A, McNulty C. Chronic fatigue syndrome: a survey of GPs attitudes and knowledge. Family Practice, 2005, 22(4), 389 – 393 DOI: 10.1093/fampra/cmi019

3) Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina 2021; 57(9):885. DOI: 10.3390/medicina57090885

4) Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes. 2003 Oct 3;1:49. DOI: 10.1186/1477-7525-1-49
 

vision blue

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Ps. And one more:

11) dont forget to look for zebras in my case when i get new symptoms. The most likely for my age and gender almost never seems to apply to me.

12). Please dont underestimate the medical knowledge of this condition, some cutting edge, that some of your patients bring to the table.
 

vision blue

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Thanks for that. That’s a list that could be useful in some contexts. However, and perhaps I wasn’t clear about this, we are ideally looking for pre-prepared documents both to save work but also because if someone else say such these things,

Anyway, thanks for the thoughtful post :thumbsup:
Hi. Since its not what younare after, can you please delete the quote in your message that shows my Top Tennlist of things i want docs to know? I already deleted my original. Thanks much and good luck with your project.
 

Dolphin

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Hi. Since its not what younare after, can you please delete the quote in your message that shows my Top Tennlist of things i want docs to know? I already deleted my original. Thanks much and good luck with your project.
Done. Thanks again.