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

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.

Edited to add: I just realised this thread will also be very useful for material to add to our website which badly needs updating.

Edited to add: We are doing both postal and email mail-outs.

 

Not for sending out but a link to the MEA Purple Book https://meassociation.org.uk/2020/0...tion-me-cfs-pvfs-clinical-and-research-guide/ would be good to include. It's free for UK medics but I guess non UKers would need to order it from the MEA or simply purchase the Kindle version:

 

Thanks. We previously circulated earlier editions of this in our newsletter (a much smaller mail-out) and suggested people could give them to their GP if they wanted. Unfortunately it has got huge now making it very, very expensive to both buy and post.
But perhaps your suggestion might work.

 

What have you sent them before? I sent my GP the re-analyses of the PACE trial by Wilshire (https://pubmed.ncbi.nlm.nih.gov/29562932/). He never responded.

 

We have sent:
- the overview of the Canadian ME/CFS guidelines (published in 2004 or 2005)
- the International Primer on ME (published in 2012)
- the clinician's guide from the IoM report (published in 2015)

I'm sure people can find fault in these if they want but that's all in the past.

 

Back in 2008/9, we also sent out a smaller mail-out with no big document but smaller patient fact sheets on, if I recall correctly, pain, sleep and pacing.
We also gave them an order form where they could order for free longer documents and DVDs and further copies of the leaflets.
A few dozen used the order form if I recall correctly.

 

Great idea for a brainstorming thread, @Dolphin!

I would definitely include a link to the Dialogues for a Neglected Illness project:

https://www.dialogues-mecfs.co.uk/films/post-exertional-malaise/
https://www.dialogues-mecfs.co.uk/films/severeme/

Information about PEM is top priority for me. Maybe short summaries of and links to something like this?

Jason et al (2019) Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey https://www.mdpi.com/2075-4418/9/1/26

Chu et al (2018) Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811

Facts about severe and very severe ME is a must for me. Maybe one of these?

Chu et al (2021) Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
https://www.mdpi.com/2227-9032/9/10/1331

Kingdon et al (2020) Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS
https://www.mdpi.com/2227-9032/8/3/197

I've been thinking about the primers a lot (very sad that they won't be updated)... Is this the "new primer" now, maybe?

Bateman et al (2021) Consensus Recommendations: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management
https://www.sciencedirect.com/science/article/pii/S0025619621005139

 

Thanks. Will consider. Planning to send out Bateman et al. 2021 this year.

We are also doing an email so some links could work for that.

 

I think either a copy of the new UK NICE guidelines or even just a reference to an online link for them would be good.

 

Thanks. Have a link to them in draft covering letter.

 

I don't think the substance matters as much as who put their name to it, what institutional reputation they can boast about. As long as the substance is accurate, it's probably good enough.

So anything by the most official sources, the rest will probably not even be skimmed. Doctors are swamped with things to read, they don't have the time to look at material that was produced by a source they don't trust. Huge logos and important names first.

 

Yes agree that is a big consideration.
I think that the fact that the Bateman et al. guidelines were published in the Mayo Clinic Proceedings journal could help.

 

While there may be less take up in the sense that the number of GPs having the Purple Book on their shelves for reference (as opposed to filed in the 'may read one day box'), there's long standing marketing research that shows when someone commits their own resources - time, money etc they are far more likely to make active use of a resource than when it is otherwise given for free, so giving the GPs the information to acquire the PB themselves might lead to more active use of the PB as a resource.

 

I just realised this thread will also be very useful for material to add to our website which badly needs updating.

 

I very much agree - backup, that's one important thing doctors want. Government documents are good. Institutions with good/big reputations are good. Recognized journals with good/big reps are good; except for one I can think of....

ETA: state, province or territory policy/ guidelines; not just national guidelines. As for example in Canada, health care is managed separately by each Province.

 

Yes, that document is currently scheduled to go out this year as mentioned above.

 

By summary do you mean summary item or we write a few lines summarising an item? Guessing the former.

Yes, having a good page on our website that they could be directed to would be good but for technical reasons won’t happen before the email and postal mail-outs this year (but could be ready by next year). We could always include a link to a webpage of another entity which had a similar list, if people have any suggestions.

Which section here?