Forward-ME Group Minutes - 10th July 2019

[Simbindi]

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.'

 

[Simbindi]

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:

Last reviewed:August 2019
Last updated:September 2018

Summary
Chronic fatigue syndrome/encephalomyelitis (CFS/ME) can be distinguished from medical and psychiatric conditions in the differential diagnosis of fatigue by the presence of debilitating fatigue for more than 6 months; combinations of cognitive dysfunction, total body pain, and unrefreshing sleep that does not restore normal function; and postexertional malaise, where exertion or other stressors leads to exacerbation of these symptoms with onset immediately or delayed by several hours or overnight

The World Health Organization classifies CFS/ME as a neurological illness.

There are no objective diagnostic tests, verified biomarkers, curative medications, or treatments for CFS/ME. The primary goals of treatment are to manage symptoms and improve functional capacity. Initial treatment should be individualised based on the patient’s most severe complaints.

The chronic but fluctuating disabilities require substantial lifestyle changes to carefully plan each day's activities, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.

Definition
Up to 30.5% of the population have chronic fatigue.[1] Therefore, it is necessary to carefully consider diagnostic criteria and exclusionary conditions in the evaluation of a patient with prolonged unremitting fatigue.

There are several diagnostic criteria for CFS/ME in common clinical usage. There is also variation and controversy in the use of the terms ME, CFS, and ME/CFS (often, but not always, used interchangeably by clinicians). Many patients consider the name 'chronic fatigue syndrome' overly simplistic, and pejorative. The term 'myalgic encephalomyelitis' is also problematic, given the limited evidence for brain inflammation.

CFS/ME is characterised by a sudden or gradual onset of persistent disabling fatigue, post-exertional malaise (PEM)/exertional exhaustion, unrefreshing sleep, cognitive and autonomic dysfunction, myalgia, arthralgia, headaches, and sore throat and tender lymph nodes (without palpable lymphadenopathy), with symptoms lasting at least 6 months.[2] The fatigue is not related to other medical or psychiatric conditions, and symptoms do not improve with sleep or rest.

Definitions of CFS/ME have evolved from a focus on fatigue and impairment as described in the US Centers for Disease Control (CDC) criteria,[3] to PEM/exertional exhaustion in ME/CFS as defined by the Canadian Consensus Criteria,[4][5] and systemic exertion intolerance disease (SEID) introduced in 2015 by the US National Academy of Medicine (then known as the Institute of Medicine [IOM]). SEID was defined based on an extensive review of the literature, and was introduced as an alternative term for CFS/ME to emphasise that dysfunction involves the entire body, and that it is aggravated by physical or cognitive exertion and other stressors.[6][7] Diagnosis of SEID requires disabling fatigue, PEM, and unrefreshing sleep that are persistent, moderate or severe in severity, and present at least 50% of the time, plus either cognitive or orthostatic intolerance with the same severity and frequency.[6] Pain was not considered unique to CFS/ME, and so was not included in the SEID criteria. Use of the term SEID is not currently widespread, and within this topic the nomenclature CFS/ME is used. These 3 definitions (CDC, Canadian Consensus Criteria, and National Academy of Medicine/IOM) have compatible criteria that focus on PEM, disability, sleep, pain, and cognition.[8][9]

PEM is the most characteristic feature of CFS/ME according to the National Academy of Medicine/IOM criteria.[6][7] PEM has been described as a group of symptoms following mental or physical exertion, lasting 24 hours or more. Symptoms of PEM include fatigue, headaches, muscle aches, cognitive deficits, and insomnia. It can occur after even simple tasks (e.g., walking, or holding a conversation) and requires people with CFS/ME to make significant lifestyle changes to conserve their physical resources and mental concentration to stay competent in normal occupational, educational, and social settings.[10] Patients are often limited to a few hours per day of productive endeavours, with the remainder of the time spent resting with slow and partial recovery from the disorganised thoughts, total body pain, malaise, and other features of their chronic fatigue state. Consideration of 'fatigue' as mental or physical tiredness is too simplistic to encompass the scope of impairment in CFS/ME, and belies the inadequacy of the vocabulary of fatigue. There is a strong bias to the vocabulary of acute viral illness, such as influenza and poliomyelitis, because these were considered historical precedents of CFS/ME.[11]

The World Health Organization classifies CFS/ME as a neurological illness.[12]

Edited to add the quotation.

 

[Cinders66]

I’m not an expert on undergraduate medical education but I get the impression it is a bit ad hoc so as I say not all of the thousands of conditions are covered (just because something is rare doesn’t mean it is not important). My guess is neurologists, endocrinologists, etc. give lectures but ME or CFS could fall through the cracks as doesn’t neatly fit in one. Undergraduate education has to cover huge areas between all the science and then specific areas. My impression from medical school friends in the past was the last two years were divided between surgery, psychiatry, general medicine and a fourth area (maybe paediatrics?).

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.

 

[Cinders66]

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.

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.

 

[NelliePledge]

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.

Only on my phone so I can’t easily search there’s definitely a thread about this. It had some good content from Dr Baraniuk especially in the intro but the detail definitely still had CBT/GET.

 

[Simbindi]

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.

 

[DigitalDrifter]

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.

 

[Simbindi]

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).

 

[Mithriel]

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.

 

[Cinders66]

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”