ME Global Chronicle #10 - Good Resource!

[Cort]

Lots of good stuff in here!

One thing in the beginning I virulently disagree with I will get off my chest and move on. I know many people are Jeanette Burgmeister fans but I am not...

• http://let-me.be/news.php?item.11.1

The great work of Jeanette Burmeister has achieved more for ME and CFS patients than most of the ME/CFS organisations have achieved over the last decade. Her courageous and principled stand is an example to us all. We have enough biological evidence, medical evidence, and doctor’s testimonies to prove ME is a serious biological illness and win court cases against certain charlatan psychiatrists and their politician and civil servant puppets.

What is great about someone who continues to violently slam the IOM Report - the same report authored by some of our best ME/CFS physicians and experts (Klimas, Rowe, Bateman, Davis and others) - which has gotten us more good press than anything in the past 20 years? Which Dr. Montoya said was going to help him greatly at Stanford...

Who's repeatedly creamed the Solve ME/CFS Initiative - with all the good research work they've done - and who is mostly focused on finding anything negative anywhere and amplifying that while ignoring anything positive that's going on. That is not progress! That is self-righteous, unbalanced advocacy IMO....

If you were to try to understand where ME/CFS is from her posts you'd think we were in the worst shape we've been in for decades instead of finally having some momentum for the first time in decades.

In that issue Lenny Jason states:

“The future of the field is in connecting the many patient and scientific groups into one larger body that is united for change. Any events that bring people together across countries and organizations should be promoted.

The message is simple, we have more impact with numbers, and when we flex our collective muscles, then we become a movement like the civil rights, women’s and disability revolutions of the 60s, 70s and 80s.

The HIV/AIDS groups changed policy throughout the world, but they did it by keeping their focus on critical issues and demanding change, and although the voices in that movement were also divided, for a few things like increased funding and provision of services, they were all together.”

I don't see Burgmeister fitting in that scenario at all.

Getting off my high-horse now...

Other than that - the best give and take on the name and IOM report I've seen, a good section the MTHFR mutation, a very good transcript of an Alan Light interview and more.

An excellent resource