Action alert: Tell media/congress "What would you do if you were well?" for Mar 25 briefing

[Cheshire]

The IOM has no power to make anything "official". All they do is produce reports as recommendations.

HHS has not officially adopted anything. As a matter of fact, we have heard nothing yet from HHS.

When I used the term "official" I didn't mean to say IOM had the power to make anything "official". I meant to say the report was written by an "official" US Institution.

 

[Sasha]

The IOM has no power to make anything "official". All they do is produce reports as recommendations.

HHS has not officially adopted anything. As a matter of fact, we have heard nothing yet from HHS.

Yet, there is all this media blitz and SMCI is arranging this event with congressional representatives.

This is very odd.

I don't find it odd at all. A lot of us have been jumping up and down wanting someone to start using this fabulous weapon that we've been given to apply pressure to the NIH for more funding and to get all the other good things we want - centres of excellence, and so on.

I don't see what the point would be of waiting for the HHS to do anything. The time to strike is right now, while this thing is still news.

 

[Nielk]

When I used the term "official" I didn't mean to say IOM had the power to make anything "official". I meant to say the report was written by an "official" US Institution.

The IOM is a private institution.

 

[Cheshire]

So let's say a prestigious institution.
Or is it not?

 

[Nielk]

So let's say a prestigious institution.
Or is it not?

Yes. It's definitely a prestigious institution.

 

[Nielk]

I don't find it odd at all. A lot of us have been jumping up and down wanting someone to start using this fabulous weapon that we've been given to apply pressure to the NIH for more funding and to get all the other good things we want - centres of excellence, and so on.

I don't see what the point would be of waiting for the HHS to do anything. The time to strike is right now, while this thing is still news.

I understand the urgency for a call for major research funding for the disease. This is one thing that I think that we can all agree with.

What I don't agree with is the promotion of the IOM criteria and name change.

 

[Sasha]

Interestingly enough, this guest post is featured on MEAdvocacy.org, who got a piece in the Washington Post calling for the rejection of the IOM report. I'm glad to see them hosting a more pragmatic view:

http://www.meadvocacy.org/meadvocacy_on_wlwt

Due to the publicity from the IOM Criteria release, chronic fatigue syndrome and systemic exertion intolerance disease are in the news. No matter what your opinion of the new name and criteria are, this is a great opportunity to make the public more aware of the crisis of severe ME patients and the great need for more research [...]

I can sympathise with the people who aren't keen on the new name and criteria finding it frustrating to see the report getting such widespread attention but it really does represent a huge opportunity to petition the NIH for more funding. We should be making this most of this chance. Opportunities like this don't come round very often.

 

[Mij]

I've emailed Morgan Fairchild to thank her. I also asked if she wouldn't mind sharing if she ever suffered from M.E. and respected her privacy if she didn't want to respond.

I dont' see any indication online or any interviews where she ever mentioned she had M.E. or was ill. It could be a misinformation from years ago that just got repeated over and over again. It's possible she is close to someone who suffered. She is very active and involved in many causes.

Either way, I'm not expecting a response from her but felt I could at least try

 

[aimossy]

I understand the urgency for a call for major research funding for the disease. This is one thing that I think that we can all agree with.

What I don't agree with is the promotion of the IOM criteria and name change.

You have possibly identified the agreed line of action for all, which is also one of our major priorities as a whole, and this could all boil down to how it is done in order to have everyone behind this?

 

[Sean]

Bottom line for me out of all this, the primary aim of the exercise, is more funding. Much, much more funding. A minimum of 10-15 times more, for starters, worldwide, now, with the vast majority of it spent on high quality biomedical studies, using clear objective outcome measures.

(I have no problem with some psychosocial research being done, the sort of stuff Lenny Jason does, for example. But the hardcore psychosocial mob can run a cake stall for their future funds.)

 

[Mij]

I received a response to my email from Morgan Fairchild!

Thanks! I'm so sorry to hear about your long-term issues with CFS. I know
I got off easy with this disease. Please know that I will continue to
help with this by seeking attention and funding for it.

Best,

Morgan