The American Institute of Medicine report on redefining ME/CFS - they suggest a different new definition.

[Whippetlover]

I cried when I read the first draft of this report because it represents the first real shift in understanding of the what we call Ramsay's Disease on this forum. They suggest a different definition which some on the US blog that I subscribe to don't like and some do. Personally I don't care what the condition that has taken my whole life away from me is called because that is not what is important about the report. The importance is in how thoroughly the report has investigated the latest research and the fundamental shift in attitude to this illness. They have finally caught on to just how debilitating it is!

The link will direct to a website where you can download a copy of the report. You can either sign up or download it as a guest. It's pretty straightforward I think.

iom.edu/Reports/2015/ME-CFS...

Christine

[Ian123]

Agreed the report was a big positive making some very clear statements, among the most important were - this is not a psychiatric disease and begin treatment of symptoms from first meeting even though the six month until a diagnosis can be confirmed rule still applies.

There is more on this subject at healthunlocked.com/ramsaysd... thanks for sharing Whippetlover.

[Stormchaser]

ME/CFS Clinicians’ Guide less effort than the main report . Attitude towards the illness with recognising the serious burden on lives of been sick are things I have held in heart for years. Credible science body the IOM no excuses for their report not having a serious change on how the media tells our story.

[Whippetlover in reply to Stormchaser]

There has been a fair amount of coverage in the US media. I don't have the energy to post everything I hear about. No country can control freedom of the press - no democracy anyway.

[Halflife]

The new name is clunky call it whatever if the funding of research and drug trials gives some lives back the children are who we fight for knowing what we do.

[Whippetlover]

Thanks to those who appreciate my effort. If you don't like anything in the report - or anything else! Please don't shoot the messenger or I won't post anything else!

[slowmotion in reply to Whippetlover]

Appreciating the effort Whippetlover thanks for sharing.

[SophiaG]

Saved so I can read it later thank you Whippetlover.

[Whippetlover in reply to SophiaG]

It is a bit long and I haven't read every word, just the Summary at the beginning and then clicked on any chapter I was particularly interested in and you are very welcome SophiaG.