frontiers in Pediatrics: Initiating Care of a patient with ME/CFS - Lapp - 2019

[Kalliope]

Initiating Care of a Patient with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

This paper introduces the primary care physician to the unique and challenging aspects of initially diagnosing and managing a complex condition for which there are a plethora of symptoms, few physical findings, no known cause, and no specific treatments. While daunting, the rewards are many, and those who pursue an interest in ME/CFS find themselves at the forefront of medicine.https://www.frontiersin.org/article...3NZYFAWVa0JOD4aT9lvR38BUxAoY7klxSvkdlIK5mKVvE

 

[Esther12]

Contrasting a psychological illness with "a real illness" in the second paragraph seems an unfortunate use of language.

 

[Trish]

I have just read the whole paper. It sounds like something we in the UK can only dream about! A GP who understands ME, does all the required tests, knows about pacing and rest and step and heart rate monitoring, treats symptoms and co-morbidities, sees the patient regularly and spends time with them...
No mention of GET, CBT, etc etc.
If only.
Great to see such a paper published.
One to highlight for NICE? @adambeyoncelowe , @Keela Too

 

[Mithriel]

Contrasting a psychological illness with "a real illness" in the second paragraph seems an unfortunate use of language.

Actually, he does not do that. He says that ME is a real illness, not a psychological condition. The BPSers insist they do not think we are mentally ill and we do not get the respect that mental illness does (despite the stigma). There may not be enough support for people with depression but they are not mocked by their doctors.

They think we are afraid to do anything in case it hurts. We are faced with all the problems of life that everyone else faces but we sit back and whimper. We do not have a mental illness like anxiety or depression where the brain and emotions are broken, we are morally weak.

ME is a genuine dysfunction of the body which exists regardless of our mental outlook or coping skills. It is real.

 

[Esther12]

Actually, he does not do that. He says that ME is a real illness, not a psychological condition. The BPSers insist they do not think we are mentally ill and we do not get the respect that mental illness does (despite the stigma). There may not be enough support for people with depression but they are not mocked by their doctors.

They think we are afraid to do anything in case it hurts. We are faced with all the problems of life that everyone else faces but we sit back and whimper. We do not have a mental illness like anxiety or depression where the brain and emotions are broken, we are morally weak.

ME is a genuine dysfunction of the body which exists regardless of our mental outlook or coping skills. It is real.

I agree with most of that, and maybe I should have been clearer that he said 'condition' not 'illness' (I'm not sure it makes much difference to me, but I can forget the distinctions of some of these terms) but I think that the 'but' he used in that sentence could be seen as implying there's something less 'real' about psychological conditions.

Many individuals with ME/CFS have been humiliated or dismissed by other providers, so one will need to be as non-judgmental as possible and acknowledge that ME/CFS is not a psychological condition but a real illness.

I don't think that this was intended to be dismissive of psychological conditions, but given the politics around ME/CFS I thought that it was an unfortunate way of phrasing things.

 

[RoseE]

How did you react to this bit... frank isn't he.

"Persons with ME/CFS (PWCs) are admittedly very complex and challenging but eternally grateful for any help that you provide. Many providers find this challenge both fascinating and rewarding, but it may also be time consuming. Many of us who first started seeing PWCs found that we had to limit the number of such patients seen each week until we developed proficiency. It was also helpful to see patients regularly—perhaps every 2–4 weeks—and limit them to 1 or 2 problems at each visit. Many practitioners will reserve the last appointment of the day for such patients so that they can spend more time, if they wish."

For my daughter's appointments we book the last time of the day at 7.30pm. The clinic is nice and quiet then (less bugs and busy-ness). My daughter takes a long list of updates. Normally around 10 - perhaps I should mention this limit of 2 problems! And the GP listens very patiently and then moves on to making notes, and waiting for the next thing. Listening sure is important, and my daughter seems reassured by that, but it is hard to watch when there is nothing to be done /no management method offered. We are so used to being able to problem solve issues - it comes as a shock when it isn't easy to do so.

 

[ukxmrv]

How did you react to this bit... frank isn't he.

"Persons with ME/CFS (PWCs) are admittedly very complex and challenging but eternally grateful for any help that you provide. Many providers find this challenge both fascinating and rewarding, but it may also be time consuming. Many of us who first started seeing PWCs found that we had to limit the number of such patients seen each week until we developed proficiency. It was also helpful to see patients regularly—perhaps every 2–4 weeks—and limit them to 1 or 2 problems at each visit. Many practitioners will reserve the last appointment of the day for such patients so that they can spend more time, if they wish."

For my daughter's appointments we book the last time of the day at 7.30pm. The clinic is nice and quiet then (less bugs and busy-ness). My daughter takes a long list of updates. Normally around 10 - perhaps I should mention this limit of 2 problems! And the GP listens very patiently and then moves on to making notes, and waiting for the next thing. Listening sure is important, and my daughter seems reassured by that, but it is hard to watch when there is nothing to be done /no management method offered. We are so used to being able to problem solve issues - it comes as a shock when it isn't easy to do so.

How long is each of these appointments?

 

[RoseE]

How long is each of these appointments?

The appointments are officially 15 minutes long - which includes the writing up notes time. We are normally there for 20 mins. We go monthly.

Most of the items that my daughter raises with the GP are brief. i.e. "I need another script of xyz."
Others might be new things we are trying or have heard help some e.g. "we have bought a heart rate monitor wrist band, and are monitoring heart rate to try to establish max hr before PEM is triggered, and to establish days I am in PEM." Which we hoped might result in a discussion or guidance. But doesn't usually. Still, what we are trying or noticing is normally acknowledged, it is logged on the notes that we have raised it, and there is so much support online for this anyway.