Disbelief, attitudes, culture and ME/CFS

Two separate broadcasters, Channel 4 and the BBC, covered the plight of those affected by ME/CFS on 19th and 20th February 2024 respectively with common themes arising – lack of care provision, disbelief, negative attitudes to ME/CFS, and cultural resistance to acceptance of ME/CFS within the ‘caring professions’.

Channel 4 news featured a 12 min segment ‘M.E.: Lives devastated – and sufferers are told it’s made up’ which inteviewed Clare Norton (mother of late Merryn Crofts) and Sean O’Neill (father of late Maeve Boothby-O’Neill) on the dearth of care their families endured when their children became ill.

Separately, the BBC website and Radio Scotland’s ‘Good Morning Scotland‘ under the banner ‘ME services at ‘rock bottom’ in Scotland say campaigners’ highlighted the complete lack of appropriate ME/CFS specialists and care provision within Scotland – especially since the death of Keith Anderson – clinical nurse specialist at NHS Fife.

In short, no meaningful progress in provision has been made since the findings of a 2022 survey of care provision across Scotland’s 14 NHS Boards (of which only 10 reponded) which found

More than half of the NHS Boards that responded to this survey did not have specific ME/CFS referral pathways, and only one had a specifically trained ME/CFS staff nurse. Many people with ME/CFS were referred onto long-term condition management pathways for other illnesses, such as Long COVID or chronic pain, as these often provided suitable support and management options for people who experience conditions with similar symptoms to ME/CFS. Most NHS Board responses highlighted that there is an awareness of the updated NICE guidelines, specifically around Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Despite this awareness, implementation of the updated guidelines as a whole was varied due to limited resources, lack of specific pathways or trained ME/CFS staff to support implementation, referrals of people with ME/CFS to third sector organisations or other long term condition management pathways, and increased caseloads due to the impact of COVID-19.

Executive Summary – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022

According to the BBC “The (Scottish) government said it was considering a recent analysis of provision across Scotland and was committed to creating a more equitable service.”

It must be recalled that a year ago (2nd February 2023), in the Scottish Parliament’s debate on ME, Jackie Baillie MSP gave useful background to the situation then existing in Scotland in that there was no specialist consultant and only a single specialist nurse (the late Keith Anderson) in Scotland, despite the fact that in a typical GP practice of 10,000 patients between 20 and 40 will have an ME/CFS diagnosis. Nevertheless, a survey of GPs showed that 70% of respondents felt that the illness was ‘rare’ and 13% that the illness was psychological. Despite an estimated cost to the Scottish economy of £360m, (c£17,000 per patient), the Scottish government has funded only 2 projects in the past decade, with the most recent being a co-funded PhD place. The place cost £45,000 to which the Scottish government’s contribution equates to approximately £1 per person in Scotland diagnosed with the illness.

It is instructive to note that only this month The Netherlands’ government has committed 27m Euros to fund long-COVID clinics – it being recognised that the country lacked a network of clinics to care for the needs of the 90-100,000 long-COVID patient community.

Both media stories highlight the sometimes impossibility for those with ME/CFS to access appropraite care. Issues which are highlighted as ‘problem statements’ within the UK Government’s draft Delivery Plan for ME/CFS.

  1. Many children and adults with ME/CFS feel that they have not been believed, supported or treated equally across all settings and professional groups.
  2. There is limited objective evidence for what current attitudes are towards ME/CFS among most health, social care and other professionals.
  3. Many people with personal experience do not feel that professionals always fully acknowledge or understand the impact of ME/CFS on their daily life.
  4. There remain concerns about how best to manage and approach ME/CFS in some services, despite the updated NICE guideline on ME/CFS (NG206).
  5. There is limited appropriate undergraduate and postgraduate healthcare professional training on ME/CFS.
  6. There are limited appropriate educational opportunities on ME/CFS for other professional groups (for example, social care, education, welfare, employers).

Mr O’Neill ended his Channel 4 interview by saying “I hope we are starting to see the recognition of ME as a real physical illness that really damages people and destroys families”. So do we but hope only goes so far ……. action is now needed by the governments in Westminster and in Holyrood.

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