Journal of IiMER Volume 13 Issue 1 Invest in ME Research group where positions seem to be able to be negotiated. A “balance” was created where no “balance” was necessary. The Centre for Guidelines (CfG) develops guidance based on - • the promotion of good health • the prevention of ill health • the appropriate treatment and care for people with specific diseases and conditions • social care and service delivery We contend that retaining the existing guidelines – especially the recommendations for CBT and GET that are known to harm patients – is not promotion of good health. We also contend that retaining these recommendations is not preventing ill health. We provided a letter to Professor Baker from an ME patient who was a civil servant and who clearly described the harm done by CBT and GET. Professor Baker’s response was that the existing guidelines had “nuances” (nuances only perceived by Professor Baker it would seem) that apparently meant that patients did not have to accept CBT or GET. The fact is that insurance companies force people to go through these shambolic treatments precisely because they are recommendations by NICE. NICE seem to think that it would be possible for patients suffering from ME to have the capacity (either physically or financially) to fight the might of insurance companies. The level of puerile thinking on the part of NICE is unconscionable. The opportunity to withdraw these irresponsible recommendations from the existing guidelines has been lost and we are left with a shambolic working group selection process that augurs badly for the future. NICE could have removed the politics from this topic if it had approached the whole review with transparency. Now we are left with a compromised working group full of self-interest and conflicts of interest and we can only foresee another wasted opportunity and a fudges being formed for publication in 2020 that will serve nobody. At least NICE must accept all responsibility for any harm caused to patients who are forced into trying CBT and/or GET due to NICE retaining the existing recommendations for CBT and GET. Hopefully, other developments that may come to fruition over the next year will leave these farcical NICE tactics as a redundant relic from the past. One wonders what NICE can really imagine will be available for their review. The IOM carried out an extensive literature review in their 2015 report. Recently the Swedish authorities have examined ME. Their report follows – and it is doubtful that in one year NICE will deliver anything original – unless they remove CBT and GET completely, as many other countries have done or are doing. What NICE could have done is review the recent analysis by Sweden and their National Board of Health and Welfare. Sweden From Article number 2018-12-48 1(2) A review of the current knowledge status for Myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS Summary Socialstyrelsen (National Board of Health and Welfare) has been tasked by the Government to review the knowledge status and examine the prerequisites for providing support to healthcare professionals through guidelines and insurance medicine decision support (FMB) with regard to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Patients with ME/CFS have autonomous, cognitive and immunological symptoms. Typical symptoms are tiredness or fatigue, influenza-like symptoms with a feeling of fever, general pain in joints and Invest in ME Research (Charity Nr. 1153730) investinme.org Page 16 of 52
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