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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269106/

JRSM Short Rep. 2012 Jan; 3(1): 4.
Published online 2012 Jan 12. doi: 10.1258/shorts.2011.011127
PMCID: PMC3269106
PMID: 22299071
Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey
Anoop Devasahayam,1 Tara Lawn,2 Maurice Murphy,3 and Peter D White4 !!!!!!!!!!!!!!!!!!!!!
Misdiagnosis on a grand scale?

http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/
 
Michiel Tack said:
What about the CFS-centres? Even if they are BPS-oriented, isn't there usually some specialist who can make the diagnosis?

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No they might be nominally under a Dr but the person who saw me in 2016 was a physio. There was also an occupational therapist who saw people on initial assessment as well. In some areas there isn’t a CFS clinic at all. Very few have a specialist of any kind most likely to be overseen by a psychologist. The one I went to is closed to new referrals people go to a generic pain clinic. A decent well informed GP would do a better job.
 
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NelliePledge said:
The one I went to is closed to new referrals people go to a generic pain clinic. A decent well informed GP would do a better job.
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Sad that there are ME/CFS centres without someone who can make the diagnosis of ME/CFS. On twitter I heard from Sasha that the same was true in Australia.

I agree that a well informed GP would be helpful, but don't see it as a realistic goal to expect from them to make a complex diagnosis like ME/CFS. It requires all sorts of complex investigations to rule out other possible causes of the symptoms.

In my view patients in which the GP suspects ME/CFS should be referred to a specialist ME/CFS centre or if that isn't available a specialist in internal medicine in a local hospital, where the diagnosis could be made.
 
Michiel Tack said:
Sad that there are ME/CFS centres without someone who can make the diagnosis of ME/CFS. On twitter I heard from Sasha that the same was true in Australia.

I agree that a well informed GP would be helpful, but don't see it as a realistic goal to expect from them to make a complex diagnosis like ME/CFS. It requires all sorts of complex investigations to rule out other possible causes of the symptoms.

In my view patients in which the GP suspects ME/CFS should be referred to a specialist ME/CFS centre or if that isn't available a specialist in internal medicine in a local hospital, where the diagnosis could be made.
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Right but that isn’t going to happen in the uk until the NICE guidelines change
 
NelliePledge said:
Right but that isn’t going to happen in the uk until the NICE guidelines change
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Yes, I was making the argument with the NICE guidelines in mind.

I think we should not ask for better informed GPs with the idea that they could make the diagnosis. I think internists should be educated about ME/CFS and local ME/CFS centres should be formed where the diagnosis can be made. NICE will not be able to offer much in terms of treatment, but such a recommendation could help ME/CFS patients in the UK, IMHO. It would probably also help in research if patients all over the country are reliably diagnosed.

Sorry for the off topic digression.
 
Barry said:
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.
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Thanks for the excellent suggestion, which I duly followed. This is what I emailed them as my explanation for choosing 'other' as one of my answers:

Regarding the quick survey “What do you consider are the most important three things that a GP needs to know about ME/CFS?”:

The single most important thing is that GPs understand about PEM and screen for it early and, if present, advise patients on pacing strategies and the dangers of overexertion.

While this could be considered as included in answer options 1 or 2, it is so important it needs to be spelled out separately and in capital letters.​
 
Michiel Tack said:
I agree that a well informed GP would be helpful, but don't see it as a realistic goal to expect from them to make a complex diagnosis like ME/CFS. It requires all sorts of complex investigations to rule out other possible causes of the symptoms.

In my view patients in which the GP suspects ME/CFS should be referred to a specialist ME/CFS centre or if that isn't available a specialist in internal medicine in a local hospital, where the diagnosis could be made.
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Like Michiel, I think, most GPs won't have the expertise or willingness to make an ME diagnosis. On the other hand, as others pointed out, most "CFS" Centres in the UK and other countries still have an inapproriate understanding of the illness.

So I didn't vote for the first options. Instead, I wished GPs confined themselves to coordinate the diagnostic process using basic information(*), to refer patients to an ME informed neurologist, internist, rheumatologist or paedritician (recommeded by a trustworthy charity), who then will rule out other conditions, will confirm the diagnosis, inform the GP about the impact of symptoms (i n particular PEM) and pharmacological symptom management, and should also be consulted by the GP when their patient gets new symptoms or comorbidities.

I sent something like that as an additional answer. Also made additions to the two options I voted for:
  • A willingness to make home visits and email/telephone consultations for severely affected (email and telephone consultation should also be available for moderately affected IMO)
  • Providing support and information re: benefits, employment etc. (support more important than information)
(*) For example, as a starter, Charles Shepherd's "What is M.E?" ( https://www.meassociation.org.uk/about/ ) which to me seems more apt than the ME Association's "M.E. Factsheet: What you need to know about M.E?" (Nov. 2018). Couldn't find a PDF format of CS's "What is M.E.?" on the homepage, though -- would be helpful to have a printable version to hand it out to the GP.)
 
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Michiel Tack said:
I think internists should be educated about ME/CFS and local ME/CFS centres should be formed where the diagnosis can be made.
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I'm not sure what, exactly, an internist is. In the UK the GP would refer to a specific clinic or speciality - endocrinology, cardiology or specific clinics such as family planning or.....IAPT.

I can see where you're coming from @Michiel Tack, but in the UK these clinics are pot luck and, if you're unlucky, you could find yourself being pushed into GET or some other inappropriate treatment. Refusal to comply could mean your GP withdraws support and that could even affect your benefits.

Or, as is currently starting to happen, you could find yourself in an IAPT clinic. That'll be the end of any further health tests for you.

Be careful what you wish for.....
 
NelliePledge said:
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.
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It took nearly 12 months for my aunt to get a home visit. The GP told her that there was nothing she could do and had to be pushed to agree to blood testing . Even with a practice copy of purple book, no sleep/ pain meds offered, no symptom discussion to screen for comorbidities.
If there is no willingness to even read up on something prior to a home visit ( when you know the patient is bedbound) , home visits are of no use without prior knowledge
 
Amw66 said:
It took nearly 12 months for my aunt to get a home visit. The GP told her that there was nothing she could do and had to be pushed to agree to blood testing . Even with a practice copy of purple book, no sleep/ pain meds offered, no symptom discussion to screen for comorbidities.
If there is no willingness to even read up on something prior to a home visit ( when you know the patient is bedbound) , home visits are of no use without prior knowledge
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I agree that’s why it has to be alongside effective GP education.
 
After diagnosis, the patient needs to be taught activity management/pacing. Without pacing, symptoms will remain uncontrolled regardless of the treatment or specialist.

Doctors need to understand the importance of pacing, and provide patient education and support. I wish there were an option for that in the survey.
 
Webdog said:
After diagnosis, the patient needs to be taught activity management/pacing. Without pacing, symptoms will remain uncontrolled regardless of the treatment or specialist.

Doctors need to understand the importance of pacing, and provide patient education and support. I wish there were an option for that in the survey.
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There is an option for that, sort of. Do as @Barry suggested and tick "Other", then email them your opinion "Doctors need to understand the importance of pacing, and provide patient education and support."
 
Ravn said:
There is an option for that, sort of. Do as @Barry suggested and tick "Other", then email them your opinion "Doctors need to understand the importance of pacing, and provide patient education and support."
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Direct link to contact Russell Fleming for additional feedback: https://www.meassociation.org.uk/contact-website/

(link not provided with the survey, so it took foggy me a while to find the info here: )

You can find the survey on the Homepage of our website about half-way down the page. 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.
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https://www.meassociation.org.uk/20...a-gp-needs-to-know-about-m-e-08-january-2019/
 
Webdog said:
Doctors need to understand the importance of pacing, and provide patient education and support. I wish there were an option for that in the survey.
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I first thought this was implicated in the answer "An understanding of the impact of symptoms (....)". But I agree, the importance of pacing and the potential harm of exercise should be spelled out.
 
GPs have 10 minute appointments, so ongoing support, education and advice on employment/ benefits needs to be carried out by OT,/ social worker who can spend longer with patients. A wider education of allied health professionals will be needed.
A journal like Pulse should be able to update GPs on research, if the emphasis moves away from CBT/ GET.
 
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obeat said:
GPs have 10 minute appointments, so ongoing support, education and advice on employment/ benefits needs to be carried out by OT,/ social worker who can spend longer with patients. A wider education of allied health professionals will be needed.
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I think given the current dire lack of knowledge, combined with the very bad information being spread by the likes of AfME GPs also need to know enough to be able to tell when their patient is being put at risk by bad advice - and be prepared to protect their patient, if necessary.

Edited- our problem being that we can't assume any of the people who should be knowledgeable are. If they have some knowledge then it's just as likely to be detrimental as supportive.
 
I needed to "prime" a new GP about husband's ME who was being asked to process a referral -(4 page form) for a review with the Suffolk Specialist ME and CFS service doctor.

I rang into the practice manager and supplied all the necessary paperwork and requested the GP look at them ahead of the appointment.

My husband asked for a telephone consultation and he had sent in the Canadian Criteria Symptom Hierarchy Chart, ( 2 pages displayed on a landscape A4 page- which he had filled in before hand) and ahead of that consultation.

The GP was good. He had scanned the two documents ahead.

He suggested filling in the referral then and there after going through the Symptom Hierarchy chart first.
It took exactly 15 minutes to negotiate, complete and send off electronically.
 

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