Forward-ME Group Minutes - 10th July 2019

As the GP training doesn't specifically cover CFS/ME and they won't have been taught it in medical school, then their knowledge is going to come from courses such as the RCGP CFS/ME one that's been discussed on other threads (and was mentioned in the ME parliamentary debate):

https://elearning.rcgp.org.uk/course/info.php?id=93

Or it's going to come from GP's reading general NHS information and the CFS/ME 2007 guidelines.

Or it's going to come from them looking it up on GP websites, such as:

https://www.gpnotebook.co.uk/simplepage.cfm?ID=-650837995&linkID=9487&cook=no [note: you can only have a few open access views of this site, so save any pages to your computer if you want to re-read them]

The latter website uses the Oxford Criteria to define CFS/ME and summarises it as follows:

'Chronic fatigue syndrome is defined as a severe disabling fatigue which lasts for several months. The fatigue is made worse by minimal physical or mental exertion, and there is no adequate medical explanation for the fatigue.'

 

The BMJ information looks like it may be significantly better, but a subscription is needed to view the complete text:

https://bestpractice.bmj.com/topics/en-gb/277

If someone has an institutional login, this would be worth exploring in detail.

I would have thought those on the NICE guideline committee should be looking at all these sites. Many of them seem to be basing their information on the 2007 NiCE Guidelines.

It seems Sci-hub works, but you need to do the search using each individual page/section.

For example, I was able to see this text:

Edited to add the quotation.

 

yes I agree, I was reading York medical school syllabus, first two years are anatomy etc where I guess some “bona fide” conditions might get mentioned as examples , eg here’s the myelin sheath, MS etc then placements etc and as you say we fell through cracks. Ms affects 100 000 but will be taught in depth as major neurology. Me & CFS might affect around 200 000 but as it probably is without a home it then would be part possibly of general practise where it competes with prenatal care to everything else and GPs are possibly just passing on Ill informed management stuff.

I can recognise the issue of ME falling through cracks in the system across the board . What I don’t accept is nothing being done in a strategic way to address this. So NICE will pass buck and say it’s not our fault there’s no scientific evidence or treatment to recommend , MRC will say It’s not our fault either because we rely on a system where we respond to interest and demand, it’s not our fault there’s not interest, then medical schools say well it’s not our fault there’s no interest, ME=CFS isn’t taught as there’s no specialism, It’s still seen as a grey area as there’s no hard science and so it goes on in a circle. The consequences for patients of this have been unacceptable and winding up to some understanding over decades isn’t ok when People are left so ill.

Clearly there needs to be people above this, looking at the big pictures, acknowledging the patients left devasted And making recommendations which can be put in place to turn things around, I’m guessing stimulating research plus putting out some validating educational material like USA are sort of doing would be natural way . I think that the Fault lay with mrc who should have tried to stimulate the research field to find us more information but they were too prejudiced.

I think that a strategy for advancing ME research and care should have been in place years ago, but obviously there was just the widespread assumption in high places it wasn’t needed, not a problem in the first place, plus charities who did know it was, didn’t lobby enough for one. But we could now.

@Simbindi i agree they’re therefore getting the information from poor sources. It’s Also not good enough that we have medical “care” based on an out of date, quick module for an illness so complex and debilitating which usually inadequately provides info & advice for the severe. The RCGP are apparently saying they won’t update guidance until NICE, but afaic from memory, their guide was worse based more on the undiluted bps model. The only word really to sum up the ME state of affairs is failure.

 

I think that this was discussed in previous years, I agree a lot of it is good. From what I remember though despite all the good stuff it still had a really strong GET & CBT push as treatment, based on PACE success etc.

 

The other problem is that GPs will get their information on (and understanding of) 'CFS/ME' from the patients they see most often in their consultations, and most of them are unlikely to ever see, much less manage long-term, a severe (or even moderate) ME patient. The highest proportion of patients an individual GP will see with 'suspected CFS' will not have ME, but rather chronic, idiopathic fatigue or the broadest, mildest version of 'CFS'. This will skew their view of the seriousness of our illness. Edit: Until 'ME with PEM' (not PEF) gets seperated from 'CFS with or without PEF (post exertional fatigue)' in NICE and subsquent guidelines.

I've had this direct experience with a GP - she told me everyone she supported with 'CFS/ME' was working full-time, although she also admitted that they have little or no social life. The implication was that I should be doing the same and if I wasn't then this was 'sickness behaviour'. I did change GP once I realised her attitude to ME.

 

My carers are like this.
Whilst giving me my black top Carer Z placed the bag on the inside of my sleeping bag, when I told her not to she said I should have grabbed the bag off her (it's too heavy for me), she claimed to know lots of people with my condition who do more than me and that I was being silly because I could have grabbed the bag. She also said 95% of people with my condition work.

 

Your carers sound appallingly unprofessional, but I understand how it may not be possible (as a very sick person) to be able to pursue a formal complaint or even to be able to challenge these sort of personal judgments.

This is why we desperately need appropriate and explicit NICE guidelines and information for doctors, other healthcare professionals - and carers.

ME charities should be helping to create suitable training materials for both doctors and healthcare workers, including training for carers that is pitched at an appropriate level, but is very clear on how ME (or CFS/ME) affects people. They need to make explicit how severely it affects a sufferer's function and ability to do simple daily tasks. Even so called 'mild' ME by definition has dramatically reduced a person's 'functional' ability - if it hasn't they don't have the condition (even according to the current NICE guidelines).

 

It is very strange that doctors and carers think like this. Many people with MS work, it doesn't mean that the ones who are helpless are pretending. It is the same with cancer, heart disease, rheumatoid arthritis, diabetes, autism, on and on.

Most, if not all diseases have mild cases and severe cases. We must not accept this. Even if 99% of people can work with a disease it says nothing about the other 1%.

People prick their fingers every day and think nothing of it. Some people die or need an amputation.

 

I think that its Due to people believing overcoming ME is all about motivation and trying hard so if you’re severe you’re even worse a lay about /looser, than the moderate and should certainly be trying harder like those people in work, which just doesn’t apply to having “real disability”. I think that theres a degree of similar stigma regarding migraines which often are unhelpfully viewed as headaches which ofcourse can be worked through with a paracetamol( headache versus migraine , fatigue versus ME has some similarity) and people with migraines can get judged.

if we remember the headlines around pace that over coming our fear of activity bigger factor in improving, it’s not surprising we get “encouragement”