Sources of online information for medical professionals

I'm helping with updating the ME/CFS webpage of an online guide for medical professionals.

It currently links to a few sources of more detailed (but still concise) information.

One is the recently revised CDC information for healthcare providers which is now pretty good. This improved information on such an authoritative website is so tremendously helpful in improving care around the world. The health authority that owns the resource I am working on has recognised the mismatch between what is currently recommended (the usual CBT and GET approach) and what the CDC recommends. Big thanks to the advocates who helped to improve the CDC material. @Medfeb

What other online sources of information for busy medical professionals would be useful to link to?

 

Currently the two other links the online guide has are to the NICE Guidelines (so that's not appropriate at this point) and this one:

https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro

This information on the UK site 'Patient' is not terrible, in fact I'd go so far as to say that a lot of it is good. But it could be better. Does anyone know the background of this document or the authors (Dr Colin Tidy; Dr Sarah Jarvis) involved? It was last edited on 21 Dec 2018.

I'm interested in your thoughts on this one. What would you like to see changed? Do you think it's helpful to link to?

 

Further on that 'Patient' website information:

The reference to a 'gradual increase within any individual's limitations and symptom fluctuations' is vague enough to be dangerous.

But it's the recommendation of Reverse Therapy that is really concerning and would make me recommend that the site not be linked to:

From MEPedia, it's fruit loop stuff:

 

Thanks @Ravn, I hadn't seen that thread. So it looks as if a person with CFS in the UK has provided a piece titled 'The Latest Thinking on CFS' on the 'Patient' website and material from that, including a completely unevidenced endorsement of Reverse Therapy, has been incorporated into the reference material produced for doctors.

And that material is recommended by district health boards in New Zealand to doctors ...

 

Another link in this guide for doctors that I'm reviewing is to UptoDate.

This source is discussed here:
https://www.s4me.info/threads/uptodate-me-cfs-information.5755/

It seems that, at present and despite @Webdog's persistent and awesome efforts, UptoDate is not an information source we can endorse, given its continued recommendation of GET.

 

Also the Bateman Horne centre have some interesting stuff. A number of youtube videos around patient education:

http://batemanhornecenter.org/2018-online-patient-classes/

Also they have run a clinicians summit last march and Lucinda Bateman summarised here on a youtube video:

https://www.youtube.com/watch?v=2w-06T9oAZ8

 

Thanks @Snowdrop and @Adrian, interesting links.

It will be interesting to watch out for the outputs from future clinicians' summits.

 

There's this:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer, 2017, Rowe et al
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full#h7

I haven't read it recently but I remember it being pretty good.

Is there any way that clinicians outside the UK could access an online copy of the ME Purple Book? It has the advantage of being reliably updated.

 

There’s a thread from when this came out good in parts only https://www.s4me.info/threads/a-rev...ue-syndrome-by-professor-james-baraniuk.6204/

 

There's the BACME guidelines for severe ME. Thread here:
https://www.s4me.info/threads/new-bacme-guidelines-for-severe-me.7900/

I haven't read it, but it sounds as if, while there is some good content, the underlying belief that gradually increasing activity or exposure to stimulation such as light will lead to improvement makes it impossible to recommend it.