NHS England will develop a course on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to counter ‘dismissive attitudes’ among health professionals.
Better training and education on ME/CFS is among 21 actions set out by the Government to improve NHS care for patients who are often not ‘believed, supported or treated equally’.
Many people with ME/CFS report ‘dismissive attitudes’ from some healthcare professionals and feel stigmatised, a Government interim report currently out for consultation states.
Some health professionals are not always aware of the latest NICE guidance with ‘misconceptions’ about the condition persisting, the report said.
The Department of Health and Social Care will identify professionals’ gaps in understanding around ME/CFS by September 2024 and NHS England will develop an e-learning module for those working in health and social care, the Government said.
It will include improved training on the condition in medical schools and medical colleges will be expected to ensure their training keeps pace with guidance.
A ‘Language Matters’ guide will be produced by the end of next year developed by healthcare professionals and people with personal experience of the condition.
Other action points include timely diagnosis and support for children with ME/CFS, and changes to the benefits system to improve people’s experience of assessment.
The the aim is to improve awareness and understanding of the services that are available to people who need additional support, including carers, the interim report said.
Six of the action points relate to prioritising and funding research on the condition targeted to patient need to improve understanding of the condition and disease mechanisms.
ME/CFS affects an estimated 241,000 adults and children in England.
NICE guidelines were updated in 2021 with an emphasis on personalised management plans. But there was controversy over recommendations around the use of exercise and cognitive behaviour therapy in treating patients.
Any programme based on fixed incremental increases in physical activity or exercise such as graded exercise therapy (GET), should not be used, NICE said. No therapy based on exercise or physical activity should be given as a ‘cure’.
Last month a group of 50 researchers from the UK and other countries published a systematic critique of the NICE process which they said led to guidance that ‘deviates from the scientific evidence’ and could result in patients missing out on treatments that could help them.
NICE strongly rejected the claims and said it would provide a detailed response.
The Government’s consultation, open for eight weeks, will ask for views on how well the suggested actions address issues important to those with ME/CFS and their families and how best to deliver the plan.
Health minister Will Quince said: ‘We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely.
‘To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views.’
Professor Azeem Majeed, a GP and professor of primary care and public health at Imperial College London, said: ‘I think that NHS England’s initiative to provide enhanced training and education on ME/CFS is a commendable first step towards bridging the gap between the medical community and patients living with these complex conditions.
‘However, what is missing from the plans is any discussion about issues such as workload, funding, and timely access to specialist services.
‘It’s not possible to effectively manage a patient who presents with symptoms of ME/CFS in the typical 10-15 minute GP consultation.’
He added that in many parts of England specialist services and support services for people with ME/CFS are also lacking.
‘These issues also need to be addressed if we are to improve the care and health outcomes of people with ME/CFS.’
READERS' COMMENTS [18]
Please note, only GPs are permitted to add comments to articles
and just a week ago GPs were critisised for filling in sick notes too quickly.
I am sure this new campaign will be followed by robust evidence based education on testing, diagnosing and treating these conditions- not?
More ”training”——-will it never end?
It is not that GPs do not believe patients.
So, how about some training for patients based on their lack of knowledge and belief when told by GPs that there is no treatment or specialist available that we can refer them to that will help?
And to the fact that NHS does not provide such services, nor provide information about which private services are money-grabbing charlatans and which have some evidence base behind them?
Hmm.
CFS/ME
Diagnostic criteria – no international consensus. UK criteria published by NICE.
Cause unknown
Pathology unknown
Prognosis unknown
Treatment unknown
It’s a bit hard to see quite what we are to be educated about, really.
Dear NICE,
I seem to have lost all my enthusiasm. Please can you Help Me. I’d be forever grateful etc
@Dylan,
You’ve summarised it perfectly.
Can your post be the mandatory education that GPs need? How much CPD does it count for?
I really try to help but it is not reasonable in 15 mins to debate and manage the use of industrial doses of amitripiline, gabapentin, opioids, antidepressants which aren’t helping the ‘absolute agony’ in addition to managing healthy lifestyle choices, psychology, and other symptoms proffered. There are no sensible holistic services to assist GPs with a reasonable waiting time that can be accessed and to make any referral requires such significant hoop jumping, you must wonder if the services that exist are more about dodging seeing the punters or if the commissioners take this seriously at all. Perhaps they need the training.
Physical activities are good for ME and CFS. And working help their mental health. .
Patients to self refer to readily available and appropriately trained specialist service. Simple. Too simple ?
Handwringing, empathetic platitudes delivered whilst in the full knowledge I have nowhere to refer my patients, no treatment to offer, no self help strategies to suggest
Empty gesture tokenism from HMG and NHSE as we have come to expect
Michael Mullineux – spot on!
I’m afraid I have a dismissive attitude to the proposed training on GP’s dismissive attitude to ME/CFS.
Even those of us “lucky” enough to have a CFS service to send patients to are faced with a labyrinthine time-sucking referral form involving arranging a dizzy array of inevitably normal tests, an infuriating game of patient tennis as they regularly bounce the referral back on some spurious grounds, then after an inordinate delay (during which the patient continually requests expediation letters) the glorious day finally dawns when they attend the hallowed clinic, to be told that yes, you have CFS, sadly no, there’s no effective treatment, but we REALLY SYMPATHISE with you, here’s a leaflet, here’s a website, here’s a self-help group, and you’re now discharged, so “see your GP” if you have any further problems.
They then return to me, angry and betrayed, having been led up the garden path that there was “effective treatment “ available when there clearly wasn’t..
Is this really superior to a GP saying “Look, I know it’s awful being constantly knackered, but all your blood tests are fine, it’s clearly CFS, let’s be honest, the medical profession hasn’t a Scooby Do what causes it, even less how to treat it, (and no, those Vit D tablets won’t help), but hey, look on the bright side, at least it’s not some horrible terminal illness, and most people gradually improve with time. Oh, and despite what some contrarians might say, it probably won’t do any harm to get off your arse and go for a walk once in a while.No pain, no gain and all that jazz! Here’s a leaflet. Here’s a website. Here’s a self help group”.
So much for scientific evidence based medicine. Let’s re-programme all the doctors so they can medicalise and believe anything. When are we getting the homeopathy training? At least we can give patients something.
Will those who fail to comply get sent to room 101?
I seriously think it’s harmful/borderline abusive to diagnose kids with one of these symptom syndromes. And that’s what these are, collections of symptoms with no test or treatment. Looks like the pressure groups have got to NHSE as they did with NICE. There’s plenty of well considered thought out there including the FMAs (fellow travellers) original researchers suggesting the harms in medicalisation and naming of these symptom collections as illnesses.
UK NHS = “on trend” health care from UK politicians. Actually ill? Sorry cant help, suggest you go find yourself a Dr. Try Turkey.
Any poster ‘calling out nonsense’, will be ‘moderated’!
One has to wonder where PULSE is recruiting their moderators from. Might I suggest that it is from the waffling and foundering NICE and NHSE?
I am never dismissive towards ME/CFS. I am dismissive when it is wrongly diagnosed which happens all the time.
And if graduated physical therapy is not recommended does the person a) lie still forever or b) have ungraduated physical therapy e.g. forced to run a marathon every day?
As we are all so busy and barely managing the conditions that DO have valid treatments would it not be better to concentrate our stretched resources on illnesses that we can help? The government should suggest ME type patients go straight to self help groups and online advice. Pretending we can help is demoralising for both the patients and the GPs and is gaslighting both groups