On 12 May, Action for ME (AfME) issued a media release for ME Awareness Week in which AfME presents the initial findings of a survey of members of both AfME and the Association of Young People with ME (AYME), focusing on health and welfare. This was a self selected survey carried out via a magazine questionnaire or via completion of an online questionnaire.
Read AfME’s media release of 12 May, here:
Download a copy of the AfME Survey or read on AfME’s blog here: http://afme.wordpress.com
In this release, AfME states:
“Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”
On 11 May, the ME Association issued the following position statement on GET:
The ME Association rejects calls being made this week for the number of graded exercise therapists to be increased because we have concerns about both the effectiveness and safety of this controversial approach to management.
The principal ones are set out below:
a GET makes a significant proportion of people with ME/CFS worse.
b One can argue about the percentage of people whose condition becomes worse as a result of GET (ie 30% to 50% in patient questionnaires) but this not just due to a problem with the way in which GET is being delivered. The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS.
c Any treatment that causes an adverse reaction in 33 – 50% of those using it cannot be recommended as a blanket form of treatment – as is the case in the guideline for treatment of ME/CFS that has been produced by the National Institute for Health and Clinical Excellence (NICE).
d If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.
e The MEA is therefore calling for an urgent review of the NICE recommendation relating to GET – which recommends that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.
f The MEA today launches its own management questionnaire (at: www.meassociation.org.uk ) as part of a major initiative to produce a multidisciplinary management programme that will focus on individual needs and one that will also be acceptable to the whole patient community.
g In the meantime the only form of activity management that the MEA endorses and recommends is pacing – a process whereby people make very flexible and, where appropriate, gradual increases in both mental and physical activity levels depending on stage, severity and variability of their illness.