@medfeb Could you elaborate on what you meant by your top goal? You had said we needed:
A fundamental reboot in all facets of U.S. federal public health policy toward this disease.
How would you or others describe this situation you'd like to fix to an uninformed person? What are some suggested fixes you or others would like to see?
Answering these two questions for each goal is what we're now asking people to do.
New patients and people not educated in ME/CFS often don't know the acronyms either.
True. We need an introductory statement of what this disease is. Congress members will likely not know unless they've had this disease in their families or have had occasion to work on these issues.
Hi
@Sasha
The one thing I thought of to add to my "list of specifics" would be a study of
DALY in this disease (and RFA for this?); it would need to include moderately-severe and very severe patients.
for instance, Centers of Excellence including the centers which have been being developed without Federal intervention;
biobanks;
RFAs for biopathology, biomarkers, and studies leading to pharmacology;
an RFA for incidence and prevalence;
an RFA for natural course...
It seems that between this post and our previous suggestions that we have enough suggested research ideas to fill a few sentences. I think what
@Sasha was asking you to do was to work on several good sentences to sum up the current research situation and some suggested fixes. The answers are the kind of wording we need now for each goal. Any more volunteers for other goals?
@WillowJ I undertand what your saying. I think that's why it's important to highlight the inequality/parity with all diseases. The illness is marginalised regardless of fitting in any box and in many ways. I think focussing on prevalence, functional loss and suffering hits an ethical and moral point which is a good thing to do. That's why I said I wasn't meaning it should be included to Sasha I was just highlighting how marginalised it is. You have also highlighted how this is so in another way in the US.
This is well-put and we should incorporate some of this wording into our letter. We should think about where it fits best: intro, certain goals, etc.
Just working on the intro paras.
Can a US person tell me who/how many people represent each citizen in congress? Do you each have one congressperson plus one senator?
I've been trying to figure this out by putting the zip code and address of one or two restaurants into some of those 'find your rep' sites but I seem to be doing it wrong!
Like this one:
https://www.opencongress.org/people/zipcodelookup
Does it just want a five-digit zip code plus the number of your house?
Each person has one congress member and two senators. Except in our capitol, D.C. and in U.S. territories (Puerto Rico,etc.): they only have if lucky, one non-voting member. opencongress.org was one of the look-up sites I had been referring to, previously - thanks . I just tried it, with only my 5-digit zip and it works. Each location also has a 4-digit zip in addition to the 5 digit zip, but most people don't know theirs. The 5-digit zip is usually all a person needs to find their representatives. But in some cases the additional 4-digit code might be needed, if your zip code is split between districts.
Each state has two senators and each congressional district within the state, has 1 congressman or congresswoman. D.C. has one congresswoman. She does not vote, but participates in debates.