What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

Editor’s comment: This study reported that roughly half of the specialist services for ME/CFS in the UK treat severely ill patients, while the rest provide minimal to no care. The 55% of services that do treat severely ill patients offer CBT, dietary advice, graded exercise, and pacing.

By Clare McDermott et al.

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), in its most severe clinical presentation, can result in patients becoming housebound and bedbound so unable to access most available specialist services. This presents particular clinical risks and treatment needs for which the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring. The extent of National Health Service (NHS) specialist provision in England for severe CFS/ME is currently unknown.

Objectives: To establish the current NHS provision for patients with severe CFS/ME in England.

Setting and participants: All 49 English NHS specialist CFS/ME adult services in England, in 2013.

Method: Cross-sectional survey by email questionnaire.

Primary outcome measures: Adherence to NICE guidelines for severe CFS/ME.

Results: All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was one NHS unit providing specialist inpatient CFS/ME provision in England.

Conclusions: Study findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME. Where treatment was provided, this appeared to comply with NICE recommendations for this patient group.

Source: Clare McDermott, Atheer Al Haddabi, Hiroko Akagi, Michelle Selby, Diane Cox, and George Lewith. What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise. BMJ Open. 2014; 4(6): e005083.

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4 thoughts on “What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise”

  1. richcarson says:

    This is sad news, as it indicates that a great country like the UK can lose track of how to treat its sickest citizens, particularly when it blindly follows in the footsteps of its the USA. Shame on any doctor who relies exclusively on CBT.

    1. IanH says:

      NICE guidelines:

      1.4.7.2 There is insufficient evidence for the use of supplements – such as vitamin B12, vitamin C, co?enzyme Q10, magnesium, NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals – for people with CFS/ME, and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME have reported finding these helpful as a part of a self-management strategy for their symptoms.

      Interesting because there is also insufficient evidence for the use of exercise or CBT – for people with CFS/ME, and therefore they should not be prescribed for treating the symptoms of the condition.

      But they use these as if there was sufficient evidence.
      The only evidence for the use of GET and CBT for ME/CFS is by NICE themselves – hardly peer reviewed. The bias against supplements is incredible and makes them look foolish.

  2. spiketheartist says:

    By printing this article, ProHealth is contributing to the dissemination of false and harmful information about CFS/ME. The introduction states: “The 55% of services that do treat severely ill patients offer CBT, dietary advice, graded exercise, and pacing.” CBT helps people adjust to the fact that they have become severely ill with CFS/ME, but it does nothing to treat it. Dietary advice for CFS/ME is neither very helpful nor very different from dietary advice for healthy people; no need to go to a specialist for that. Pacing can be summarized in a single sentence: “Rest as soon as you start to get tired” and is the most basic and essential advice that can be given to a CFS/ME patient; it hardly qualifies as specialized treatment. So far, these “specialized services” are simply unimpressive.

    However, graded exercise has been shown to help very few CFS/ME patients. The British study that purported to show its benefits has been debunked; it was shown that authors of the study had fudged the parameters in order to show seemingly positive results.

    What’s more, virtually every CFS/ME patient who has been subjected to GET will attest to the overwhelming debilitation and fatigue it causes. GET is HARMFUL to those with true CFS/ME. In comparison, supplements such as B12, vitamin C, co-enzyme Q-10, magnesium, NADH and potent multivitamins and minerals, so casually dismissed by NICE guidelines, have been known to help thousands of people with CFS/ME and have not caused harm to anyone who takes them as directed.

    This article is self-serving and will only further delay the acceptance of treatments that help and do not harm those with CFS/ME.

  3. mobiv says:

    In 2004 after 13 years of “moderate” ME(able to self care;shop;drive etc)I was persuaded to try CBT and GET.The biggest mistake I`ve ever made.I went from “moderate” to “severe” and have remained so since.I can no longer go out as am 99% housebound and basically very poor quality of life.I am totally reliant now on my husband to care for me.The only thing which,at least,halted the frightening downward spiral was a private doctor(here in the UK)prescribing Low Dose Naltrexone(LDN).

    These NHS Centres are positively harmful in that they “prescribe” the very thing ie exercise,which makes ME worse.
    I feel ashamed to be in a country whose national health service was considered the envy of the world.Shame on those in “N.I.C.E.”

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