Message from the Chair BACME on ME Awareness Month

[Daisymay]

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

 

[Luther Blissett]

How wonderfully corporate.

 

[Skycloud]

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.

 

[Luther Blissett]

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.

 

[Esther12]

But some charities/organisations are useless.

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.

 

[Woolie]

illness that may devastate lives and families.

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.

 

[Trish]

I find it very concerning that an organisation of professionals who purport to be expressing support for pwME should only list the few ME charities that support their outdated and ineffective 'therapies' and completely neglect to mention the MEA and IiMER.
And listing first on their list Colin Barton's group as 'a major regional charity' is shocking.

Edit:
Though I find it interesting that they claim that their treatments are 'designed to alleviate some of the symptoms' rather than claiming that they aid recovery.

 

[Adrian]

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 think they only linked to Action for ME because AYME no longer exists. They clearly are avoiding making any attempt to understand the criticism of the approach they are pushing. Instead they seem determined to listen only to those with similar views and hence continue to harm patients. What they should remember is that ignorance is no excuse - there is peer reviewed evidence that PACE didn't work and that their approach is not effective along with some evidence that it is harmful. As medical staff they should be aware of that and informing patients otherwise they are not getting informed consent.

 

[Adrian]

Edit:
Though I find it interesting that they claim that their treatments are 'designed to alleviate some of the symptoms' rather than claiming that they aid recovery.

But the treatments they are pushing are ones that claim to cure that is what the PACE manuals claimed. It just shows they are pushing a 'treatment' they know how to do rather than understanding the evidence.

 

[Sean]

Where's a giant steaming turd emoji when you need one? ...
.
.
.
.
.




Ahhhhhh, that feels much better.

 

[NelliePledge]

Well I was going to say this was clearly something the writer was about as enthusiastic about as having their tooth pulled.