WAMES asks NHS Wales: Don’t delay!
Implement NICE ME/CFS guideline
for safe, empathetic & equitable healthcare
Poor healthcare for many with ME/CFS in Wales
A new WAMES report into the implementation in Wales of the 2007 NICE guideline illustrates how:
- few GPs admit being aware of the guidelines and those who do, are often selective in what they implement
- many GPs failed to accept that ME is a real, debilitating condition
- it is difficult to find GPs who feel confident enough to diagnose
- many GPs show patients with suspected ME little ‘respect, sensitivity and
understanding’ - very few GPs are able or willing to give patients information about the illness, its management and the possibility of relapses, or help them develop a care plan
- there is no accepted management pathway – even if there are specialist teams offering management advice or GET & CBT in an area, GPs often don’t know they can refer patients to them
“I spoke to him about latest research about a connection to autoimmune and he said we’ve done blood tests so you are fine. He said ‘we use NICE and I need to refer you to the psychology team’. He didn’t offer any more help than that.”
Earlier this year, before the publication of the revised NICE guideline for ME/CFS was delayed, WAMES asked people in Wales to tell us about their GP consultations. The response was low but we were grateful to the people who made the effort to share their experiences.
“Following routine bloods, I was called into surgery because of slight weight gain – new GP was confused about ME/CFS, used Internet to come up with GET, had no grasp of what that was, nor any understanding that the NICE Guidelines were under review. Whole thing was a tick box exercise, a wasted GP appointment and no help whatsoever to me.”
It was disappointing to hear the same kind of stories we have been hearing for decades. Patients often count themselves fortunate if a GP admits they have no knowledge, but are still concerned enough to spend time looking for something to help relieve their symptoms!
“The doctors… have poor understanding of the condition, especially the GPs, which of course then filters through to the rest of the practice. Not even a basic level of care, and crass remarks. I visit them as little as possible as it upsets me too much. This very much adds to a sense of isolation, hopelessness and being forgotten about.”
NICE also received many examples of poor care and harm from treatments
The WAMES report also explores the wide range of examples of poor healthcare that the NICE guideline committee received during the revision process. These include:
- a lack of belief about ME/CFS as a real condition
- a lack of understanding about what it is and the disabling impact it has, especially for the severely affected, including its fluctuating nature
- confusing symptoms with signs of abuse or neglect, especially in children or the severely affected
- difficulties accessing services due to distance, mobility, sensory overload etc
- post code lottery for specialist services
- harm reported from unstructured physical activity and inflexible exercise therapy designed to treat deconditioning
The new guideline is a ‘triumph of science over discrimination’.
Patients, and many doctors, researchers and physiotherapists have been vocal in welcoming the new guideline, which has a much improved definition of ME/CFS, a rejection of harmful inflexible therapies (GET & CBT) based on a theory of ‘deconditioning’ and ‘unhelpful illness beliefs’, a focus on energy management to avoid exacerbation of symptoms (PEM).
There is a real opportunity for the 2021 NICE guideline to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.
WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:
- follow the science
- listen to patients and carers
- begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
- no delay – begin to implement the 2021 NICE ME/CFS guideline today!
Download the report: Is NICE ME/CFS guidance implemented in Wales?
This was not enough to appease them and following publication of the guideline a number of major UK medical organisations issued a scathing 
A number of researchers and doctors have been reported in the media to say the evidence supports GET and CBT as treatments, some of the statements coming from the 
Doctors leaders might be resisting the new guideline but but the campaign group 
The professional group Physios for ME have been active in researching care for patients with PEM and educating colleagues about ‘the known adverse physiological effects of exertion.’ They welcome the guideline.
Add to that the inclusion of 
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
60 ME/CFS adults were studied: 30 patients had a normal heart rate and blood pressure response during the tilt test, 4 developed delayed orthostatic hypotension, and 26 developed postural orthostatic tachycardia syndrome (POTS) during the tilt. Cerebral blood flow measurements, using extracranial Doppler, were made in the supine position pre-tilt, at end-tilt, and in the supine position at 5 minutes post-tilt. Also, cardiac index measurements were performed, using suprasternal Doppler imaging, as well as end-tidal PCO2 measurements. The change in cerebral blood flow from supine to end-tilt was expressed as a percent reduction with mean and (SD). Disease severity was scored as mild (approximately 50% reduction in activity), moderate (mostly housebound), or severe (mostly bedbound).
(3) Results: thirty-six ME/CFS patients (age: 41.25 ± 12.14) completed all questionnaires (response rate 83.7%). Muscle pain and weakness, orthostatic intolerance and intolerance to extreme temperatures were experienced and fluctuated over time. Sleep disturbances were likely to present as severe. Work and household income were associated with worsened cognitive, gastrointestinal, body pain and sleep symptoms. Increased access to healthcare services was associated with improved symptom presentation;
We explored the role of the cortical autonomic network (CAN) involved in higher-order control of ANS functioning in 34 patients with ME/CFS and 34 healthy controls under task-free conditions. All participants underwent resting-state 
Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it.
