Sources of online information for medical professionals

Hutan

Hutan

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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?
 
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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.

The condition is common and is often severely disabling[1].

ME can cause severe functional impairment and very poor quality of life. Research has indicated that significant abnormalities in the central nervous system, immune system, endocrine system and muscles contribute to the disease process.
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Diagnosing the disease remains a challenge. Patients often struggle with their illness for years before an identification is made. Once diagnosed, patients often complain of receiving hostility from their healthcare provider as well as being subjected to treatment strategies that exacerbate their symptoms[2].
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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?
 
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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.
The most important aspect of ongoing care is activity management. This involves striking the right balance between activity and rest so as not to exacerbate symptoms. This is called pacing.

Activity needs to be gradually increased within any individual's limitations and symptom fluctuations. The initial tendency to get into a cycle of excessive activity (such as going back to work) followed by further time off from work through ill health. This reduces the chance of any meaningful improvement. Therefore specialist involvement is needed at an early stage, including physiotherapy and occupational therapy.
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But it's the recommendation of Reverse Therapy that is really concerning and would make me recommend that the site not be linked to:
One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process that teaches people to identify the triggers which cause symptoms such as fatigue and unexplained pain. As soon as these triggers are recognised and understood then progress can be made to eliminate at least some of the causes of distress. In this way RT can provide a practical means of managing the emotional, cognitive and physiological processes that influence symptoms.
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From MEPedia, it's fruit loop stuff:
Reverse therapy posits that non-specific illnesses originate from a breakdown between "Bodymind" (the limbic system or the "emotional" mind) and the "Critical mind" (the frontal lobes or the "judgemental" mind). This breakdown leads to uncleared emotions, stress, and a loss of fulfilment which in turn "leads to changes in signals from the Limbic system in the brain, leading to overwork of the Hypothalamic-pituitary-adrenal axis (the HPA axis), to overload of the Adrenal glands and alterations in the muscles, gut, circulation, immune system, sleep cycle and elsewhere."

Reverse therapy uses techniques to help the patient listen to their "Bodymind", and to become more assertive, positive, and mindful. Once the patient is more in tune with their "Bodymind" and leading a more balanced life, in theory the non-specific illness should resolve itself.[1]
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Hutan said:
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.
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Hutan said:
But it's the recommendation of Reverse Therapy that is really concerning and would make me recommend that the site not be linked to:
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I agree.
Did you see this thread? A quick scan of the posts indicates many people here are not happy with that website, and certainly not with the Reverse Therapy stuff.
https://www.s4me.info/threads/patie...on-chronic-fatigue-syndrome.7322/#post-130865
 
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 ... :eek:
 
Add to that local "Mickel Therapy" which is equally expensive I am told. A local private provider had the temerity to put our local NHS logo on their site (as endorsement) without permission, until it was discovered by us and a complaint made by local NHS and us to Trading Standards.
 
Hutan said:
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.
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Its available on kindle

https://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

Edit - added link
 
In skim-only mode, but just saw that on the BMJ Best Practice website presenting Baraniuk's summary both the IOM Report (2015) and the CDC‘s recommendations on "Symptoms and Diagnosis" are linked as "guidelines" on the right side. In the category "resources" the guideline section is only accessible with subscription, though.

Also, the "patients‘ leaflets" linked on the right side, one on "Chronic Fatigue Syndrome" and one on "Depression in Adults", are only accessible with subscription.

Could anyone who has access to "BMJ Best Practice" give us some information about the guidelines, patient leaflets and "evidence" presented as "resources" for "Best Practice" for "CFS/ME"? (documents' titles, authors?)
 
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Stay away from the BACME and it's "maintaining" and "rehabilitation" talk. What happens when you try to "maintain" your level and it turns out you have the progressive form of the illness? That's how many got severe in the first place.
BACME are pure BPS and their current Chair Gabrielle Murphy is a PACE trial author.
 
daftasabrush said:
Stay away from the BACME and it's "maintaining" and "rehabilitation" talk. What happens when you try to "maintain" your level and it turns out you have the progressive form of the illness? That's how many got severe in the first place.
BACME are pure BPS and their current Chair Gabrielle Murphy is a PACE trial author.
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That's pretty much the tone of the thread quoted above.
 
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