ME Association Website Survey: What are the most important things a GP needs to know about M.E.? | 08 January 2019

[Andy]

This month the ME Association has welcomed a survey designed by a third-year medical student based at Cardiff University.

Her project is being supervised by Dr Nina Muirhead who many of you may know because of her presentation at the 2018 CMRC research conference and her work on improving medical education.

https://www.meassociation.org.uk/20...a-gp-needs-to-know-about-m-e-08-january-2019/

To go straight to the survey, visit https://www.meassociation.org.uk/ and scroll down until you find it, it looks like this

 

[Andy]

Personally I think that at least six of those options should be known by/offered by a GP.

 

[Skycloud]

The three things I voted for are the three most popular choices so far, though the number of votes cast is low at this stage. I hope that email/telephone consultations and home visits for the severely affected remains high on the list at the end of the vote.

 

[Cinders66]

Interesting the severe care has more votes than referring on. I feared it would come further down with a top 3choice system. A survey on the value of existing referral services would be interesting, if it hasn’t been done

 

[Kalliope]

Is this for UK citizens only?

 

[Trish]

I also chose the ones that are currently top 3. I didn't choose referral because in the UK there's no point as there are very few specialists with any understanding of ME, and the clinics may do more harm than good.

 

[Peter T]

I would have liked to see an option on understanding the negative consequences of extertion and that exercise is generally counter indicated.

Though one could argue that this should be understood under the 'treatments available' option, we need to know that doctors understand that exercise is not a viable treatment option. For me this is the most important; first do no harm.

 

[Trish]

I agree Peter. I would have included a specific option about understanding PEM, pacing and the harm exercise can cause.

 

[Sasha]

I would have liked to see an option on understanding the negative consequences of extertion and that exercise is generally counter indicated.

I agree - I'd have liked an option saying that GPs should know that PACE and its ilk are a scandal and that the NICE guidelines can't be trusted.

 

[Andy]

Is this for UK citizens only?

Nope, anybody can take part and, in my opinion, the more the better.

 

[Kalliope]

Nope, anybody can take part and, in my opinion, the more the better.

Thanks. I participated as well

 

[ME/CFS Skeptic]

I don't think GPs should be making the diagnosis of ME/CFS, so I went for "An understanding of the impact of symptoms and awareness of pharmacological symptom management"

EDIT: The ME Association page says : "If you have any additional feedback then please send it to Russell Fleming via email before the end of January 2019 and it will be forwarded to Dr Nina Muirhead for use anonymously."

I have taken this opportunity the make an argument I wanted to make for a while. Here's wat I've submitted:

This is a response to the survey offered by Nina Muirhead: What are the most important things a GP needs to know about M.E.? (08/01/2019).

I would like to express my doubt that GPs can accurately make the diagnosis of ME/CFS or that they should be expected to do so. Several studies [1-5], in the UK, Belgium and Australia, have shown that ME/CFS diagnoses by GPs are not reliable. When checked by specialists around 40% turn out to have another diagnosis, mostly sleep –and psychiatric disorders.

I hope that The ME Association takes note of those studies and advocates that ME/CFS diagnoses should preferably be made, not in primary care, but in specialist centres. I suspect this issue will be the subject of debate in the ongoing NICE review.


Kind regards,


Michiel Tack.

[1] Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7.

[2] Devasahayam A, Lawn T, Murphy M, White PD. Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey. JRSM Short Rep. 2012 Jan;3(1):4.

[3] Darbishire L, Ridsdale L, Seed PT. Distinguishing patients with chronic fatigue from those with chronic fatigue syndrome: a diagnostic study in UK primary care. Br J Gen Pract. 2003 Jun; 53(491): 441–445.

[4] Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol. 2016 May 17;8:97-107.

[5] Mariman A, Delesie L, Tobback E, Hanoulle I, Sermijn E, Vermeir P, Pevernagie D, Vogelaers D. Undiagnosed and comorbid disorders in patients with presumed chronic fatigue syndrome. J Psychosom Res. 2013Nov;75(5):491-6.
​

 

[Peter]

Old sayings and truths are ME patients worst enemies.

I would go as far as to say that the most important thing is knowledge of potential harm of old sayings like “just push trough”, live like before”, “don’t listen to your body” and things like that. In a couple of general sentences:

“Knowledge of how important it is for prognosis, to dramatically reduce every bit of exertion, both mental and physical in the acute phase.”

That is probably to “militant”, but it’s the bl.... truth. Would probably be the most significant thing of “do no harm”.

 

[Barry]

For anyone wanting additional options to select, I would think it essential to therefore also tick "Other" and follow it up with a brief survey-length answer as requested in the survey. If that is not done then the results will be skewed.

 

[NelliePledge]

I don't think GPs should be making the diagnosis of ME/CFS, so I went for "An understanding of the impact of symptoms and awareness of pharmacological symptom management"

EDIT: The ME Association page says : "If you have any additional feedback then please send it to Russell Fleming via email before the end of January 2019 and it will be forwarded to Dr Nina Muirhead for use anonymously."

I have taken this opportunity the make an argument I wanted to make for a while. Here's wat I've submitted:

This is a response to the survey offered by Nina Muirhead: What are the most important things a GP needs to know about M.E.? (08/01/2019).

I would like to express my doubt that GPs can accurately make the diagnosis of ME/CFS or that they should be expected to do so. Several studies [1-5], in the UK, Belgium and Australia, have shown that ME/CFS diagnoses by GPs are not reliable. When checked by specialists around 40% turn out to have another diagnosis, mostly sleep –and psychiatric disorders.

I hope that The ME Association takes note of those studies and advocates that ME/CFS diagnoses should preferably be made, not in primary care, but in specialist centres. I suspect this issue will be the subject of debate in the ongoing NICE review.


Kind regards,


Michiel Tack.

[1] Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7.

[2] Devasahayam A, Lawn T, Murphy M, White PD. Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey. JRSM Short Rep. 2012 Jan;3(1):4.

[3] Darbishire L, Ridsdale L, Seed PT. Distinguishing patients with chronic fatigue from those with chronic fatigue syndrome: a diagnostic study in UK primary care. Br J Gen Pract. 2003 Jun; 53(491): 441–445.

[4] Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol. 2016 May 17;8:97-107.

[5] Mariman A, Delesie L, Tobback E, Hanoulle I, Sermijn E, Vermeir P, Pevernagie D, Vogelaers D. Undiagnosed and comorbid disorders in patients with presumed chronic fatigue syndrome. J Psychosom Res. 2013Nov;75(5):491-6.
​

I see the point about GPs not diagnosing but we don’t want to be sent off to a CFS clinic to be “diagnosed” by a physio. There is no proper specialist provision in the UK currently and this project is about GP education about what they can do for ME patients not reforming the whole NHS approach and structure for how ME is dealt with.

 

[NelliePledge]

I put home visits for severe patients as a top priority as if GPs actually have to see severe patients that will be a good education about ME and severe folks are most in need of help.

 

[ME/CFS Skeptic]

this project is about GP education about what they can do for ME patients not reforming the whole NHS approach and structure for how ME is dealt with.

True. Guess I just wanted to make the point and saw this as an occasion to do so. I think I have seen the ME Association claim that GPs should be informed to make an accurate diagnosis of ME/CFS, so I wanted to make this argument to them.

I see the point about GPs not diagnosing but we don’t want to be sent off to a CFS clinic to be “diagnosed” by a physio. There is no proper specialist provision in the UK currently

What about the CFS-centres? Even if they are BPS-oriented, isn't there usually some specialist who can make the diagnosis?

It's important that all other possible diagnoses that can explain the symptoms are considered or excluded. Perhaps that doesn't require a CFS specialist, maybe an average internist will do. I just doubt that GPs are up to the job.

 

[Peter T]

What about the CFS-centres? Even if they are BPS-oriented, isn't there usually some specialist who can make the diagnosis?

When I was seen at a UK CFS clinic they insisted I had a consultant diagnosis before they accepted the referral from my GP; at the clinic I was only seen by an OT. Though this was a number of years ago. It seems variable whether the clinics have any specialist doctors involved with seeing patients or not.

 

[Trish]

My local ME clinic last time I was in touch with them had a GP with a 'special interest in ME' to do the diagnosis. He didn't have a clue. Worse than useless.

 

[Peter T]

My local ME clinic last time I was in touch with them had a GP with a 'special interest in ME' to do the diagnosis. He didn't have a clue. Worse than useless.

I forget the source, but wasn't there a study suggesting that the rate of misdiagnosis within even patients seen by specialist CFS Services might also be as high as 40%. It does not inspire confidence in these services.