Message from the Chair BACME on ME Awareness Month

https://www.bacme.info/patient-support-groups

See link at the bottom of the page, "Message from the Chair on ME Awareness Month 2018"

Dear Members,

The merry month of MAY is not such a merry month for all of us, especially those who are ill; it is however a hardworking month for ME Awareness.

May is designated ME Awareness month, and ME charities across the United Kingdom choose a week in which they promote education, design activities, highlight the difficulties, raise money and protest for further research into this illness that may devastate lives and families.

The British Association of CFS/ME (BACME) is an association offering a network for consultation, education and research by and for health professionals, who in turn support patients with CFS/ME, initially to validate this illness and also to offer treatments designed to help to alleviate some of the symptoms of CFS/ME.

The cause of the illness continues to elude us, and ongoing research is vital.

We would like to express our support for all the organisations working so hard to raise awareness of the illness, to reduce the stigma that unfortunately remains associated with CFS/ME, and to elevate the research platform to attract the political will to finance such research.

Members are invited to visit the websites of the national and local charities to view the activities and offer individual support. International ME Awareness Day is 12 May 2018.

With best wishes,

Dr Gabrielle Murphy

Chair, and on behalf of BACME

 

How wonderfully corporate.

 

I wish that more mention was made of patients working hard for ME Awareness, research integrity and funding etc rather than just organisations and charities. Some very productive patients have no formal link with any of them. I'm not mentioning this for me, because I do precious little. Some of the most important things have been achieved by groups of patients and individuals. And I don't mean to in any way not recognise the work of organisations/charities which include the MEA and IiME. But some charities/organisations are useless. I hope this makes sense.

 

Makes perfect sense. In fact you would think that that is the point of ME Awareness. In fact it's quite remarkable just how much patients have contributed given all the limitations placed on them. Despite this, people with ME are humans, not numbers or statistics, part of society and it would be quite nice for this to be recognised.

This Message is as banal and corporate as Traffic Bollard Awareness Month would be.

 

BACME chooses to link to Colin Barton's Sussex and Kent ME Association, Action for ME, and reMEmber. That's not a good hit-rate.

 

I have to say, I really love the "may" here! We couldn't possibly commit ourselves to saying it does devastate lives and families now, could we?

Don't know whether that's because they believe their offerings are so great that devastation can be avoided through due adherence, or just because they don't want to say anything that could unduly affect our positivity.