Dr Charles Shepherd writes
Why are we asking about NHS hospital-based services for people with ME/CFS in this month's MEA website survey?
Firstly, because we believe it's important to collect a variety of data on how people view the information and advice that they receive from NHS clinics when they are referred for either diagnosis or management of ME/CFS. This is particularly important in view of the fact that NICE is currently considering whether there should be a review of the NICE guideline on ME/CFS later in 2017.
Secondly, is because some people query whether it is worth being referred to a hospital ME/CFS clinic if the only advice on management is going to involve CBT and/or GET. As this is a regular query to the MEA information and support services, I have summarised three key points that should be considered here:
1. ME/CFS CLINICS
The ME Association receives a large amount of feedback on the hospital based ME/CFS clinics. Whilst some people have negative experiences, especially when the service has adopted a rigid or inflexible approach to management involving CBT and GET, there are other NHS services that provide good quality pragmatic advice and information on most or all of the key aspects of management, including activity management.
There is a full list of contact details for all the ME/CFS clinics in the UK on the MEA website:
The MEA website directory also contains a suitable ‘health warning' about CBT and GET.
If there is not a suitable hospital based service nearby, the Countess of Mar has established through a House of Lords PQ that you can be referred elsewhere to an NHS service/consultant of your choice:
If you want to obtain more information about the nearest NHS service you could post a message on the MEA Facebook page – where there are regular discussions on the pros and cons of individual clinics throughout the UK
2. REFERRAL FOR DIAGNOSIS
As many GPs still have insufficient knowledge, or lack the clinical judgement to make a confident diagnosis of ME/CFS, any uncertainty about diagnosis should result in referral to a hospital based ME/CFS clinic (or a physician with an interest in ME/CFS)
I know from over 30 years per sonal experience of seeing large numbers of people with a possible diagnosis of ME/CFS, along with data from the hospital clinics, that a significant minority of people who are referred with a possible diagnosis of ME/CFS turn out to have another explanation for their ME/CFS symptoms – and in some cases this involves a medical condition that can be successfully treated
The MEA guidance on key aspects of making and Early and Accurate Diagnosis can be downloaded from the MEA website:
3. REFERRAL FOR MANAGEMENT
As far as management is concerned, we believe that there is actually quite a lot of advice, information and support that health professionals with the necessary expertise should be offering to their patients with ME/CFS – especially in relation to activity management/pacing, symptom relief for pain, orthostatic symptoms, sleep disturbance etc, DWP benefits, education and employment, social care – as well as explaining (based on our current knowledge of causation) why they feel so unwell.
So if a GP cannot provide this level of information and support, then there should be a hospital-based service where it can be obtained
This is an MEA website report on the 2016 ME Awareness Week meeting is Sussex on Research and Management that I did with Dr Amolak Bansal.
The MEA also has an information leaflet covering 10 Key Aspects of Management:
Finally, there are very few doctors in the private medical sector that we recommend in relation to ME/CFS and it's very easy to start spending large sums of money on investigations and treatments of no proven value in the private sector.
So ‘going private' is not really an option for most people who require help with either diagnosis or management.
Dr Charles Shepherd
Hon Medical Adviser, MEA