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Are your experiences of having M.E. in Somerset good or bad?

 

Use the contact page to tell us how you are being treated in Somerset by educational, medical, social care, care worker professionals, friends and family.

 

This page will then give examples of people's experiences of having M.E. in Somerset (people's names will not be included on the website).  

Let us hear your voice

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Has the new NICE ME/CFS Guideline improved the way that you are being treated by medical, social care, education, complementary and alternative professionals?

The guideline was published on 29/10/2021. It is available at: https://www.nice.org.uk/guidance/ng206

Viral illnesses cause ME. Covid-19 causes 10-20% of people to develop Long Covid. About half of those with Long Covid develop a form of ME (see https://meassociation.org.uk/).

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Prognosis

  • Research indicates that approximately 5% of people recover but it is not known why they do so.

  • Approximately 25% remain severe (see https://25megroup.org/).

  • 50% remain at approximately half of normal functioning.

  • Resting  during the first 5 years of the illness gives the best outcome (see reference 5a on 'Choose your poster' page) 

'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management'

is the name of NICE Guideline 206.

The guideline says ME/CFS is a "fluctuating complex, chronic medical condition affecting multiple body systems" and that:

  • There is no cure for ME/CFS (see prognosis section above)

  • Graded Exercise Therapy (GET) or any variant of incremental increases in exercise are harmful to those who have ME/CFS. 

  • Cognitive Behavioural Therapy (CBT). The guideline draws attention to the incorrect use of CBT in the past which has harmed people with ME/CFS (i.e. professionals have incorrectly claimed that it cures ME/CFS with its use based on the faulty and baseless assumption that people's  'abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS). NICE says that the use of CBT in ME/CFS is to support people to enable them to cope with having such a life-changing medical condition (see NICE Guideline 206, Box 5 on pages 39-40).

  • The Lightning Process (or variants of same) cannot be used with people who have ME/CFS as it is potentially harmful.

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