ME/CFS on the NHS 111 Wales website
Following a request from WAMES the Welsh Ambulance Services NHS Trust has updated the information page on ME/CFS on the NHS 111 Wales website ME/CFS, to take account of the 2021 NICE guideline. WAMES is grateful for their willingness to do this.
Symptoms
The page now acknowledges the 4 symptoms needed to diagnose the condition as:
- Fatigue
- Post-exertional malaise
- Problems sleeping
- Cognitive difficulties
Diagnosis
Information about diagnosis is taken from NICE:
all 4 of the main symptoms should be present for a minimum of 6 weeks in adults and 4 weeks in children and young people
AND
the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels
AND
symptoms are not explained by another condition.
Management
The help that people can expect with management comes from the NICE guideline and includes referral to a ME/CFS specialist team, where available, who will:
- Carry out and record an assessment… to confirm the person’s diagnosis and also to help in future management.
- Develop and agree a personalised care and support plan.
- If your symptoms are severe, your doctor should ask a specialist for advice.
- Your management plan should be reviewed regularly.
The page advises against resting completely and taking up vigorous unsupervised exercise but it does say “an exercise plan may be suitable for some people living with CFS /ME, but exercise programmes such as graded exercise therapy (GET) are no longer recommended for everyone with ME/CFS”.
CBT is mentioned as an option which “may help you manage your symptoms but is not a cure… by changing the way you think and behave”. The free online mental health service, Silver Cloud, based on CBT, is recommended.
The biggest disappointment is that the definition of PEM in NICE was not included. Instead the description simply says:
“This is where exercise makes the symptoms worse. Sometimes the effect is delayed and you’ll feel exhausted a few hours after you’ve exercised, or even the next day.”
Unfortunately the NICE guideline doesn’t appear to be accepted in its entirety by the Clinical Advisors Group who have to authorise the text.
What do you think?
- Does the page give an accurate introduction to ME/CFS?
- Is it ‘Healthcare you can trust – 24/7″ as their logo says?
- Does the Welsh translation communicate the same information?
NHS 111 invite your comments at the bottom of the web page. They assure us they read them all.
“We value your feedback. Click here to complete our online survey”
NHS 111 Wales: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
The page is long but if you feel well enough, why not read it (pace yourself!) and give them your comments. If lots of readers highlight the same problems, they will hopefully reconsider…
#ImplementNICEmecfs
