What common goals can everyone work towards, regardless of their view of the IOM report?'

medfeb

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I don't know how others feel but I'd recommend using the label ME instead of ME/CFS to clearly delineate between the neuroimmune disease and the non-specific conditions that fall under the CFS label. I believe that to make forward progress politically and socially, its essential that a sharp dividing line be created between ME and CFS. This is particularly necessary given we don't know what is going to happen to Fukuda

As an FYI, the NIH neurology institute's initials are NINDS
 

Sasha

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I don't know how others feel but I'd recommend using the label ME instead of ME/CFS to clearly delineate between the neuroimmune disease and the non-specific conditions that fall under the CFS label. I believe that to make forward progress politically and socially, its essential that a sharp dividing line be created between ME and CFS. This is particularly necessary given we don't know what is going to happen to Fukuda

As an FYI, the NIH neurology institute's initials are NINDS
This is a tricky one. I've seen a lot of PWME say that especially for the US, it's best to refer to it as ME/CFS because most patients don't even know their disease by the 'ME' name.

Given that we're going 'Lego', perhaps we should let people make their own minds up.

I think this is another of those issues that we could get really bogged down in and never come to agreement (because there are only two bad positions to choose between, each with their own disadvantages).
 
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What do you think would be a good thing for us to ask for, to get ME out of Women's Health and into somewhere else? I think we could do with some medical input from someone who knows about this stuff (you!).

Even if this is somewhat premature it seems such a crucial issue in the poor treatment of ME by the HHS that it seems highly desirable to get the ball rolling somehow.
I really don't know what the implications are. If anything I think ME must be a neurological disease, whatever else it might be (in some cases). The question then is whether neurology is in practice the right home for clinical care.
 

Sasha

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I really don't know what the implications are. If anything I think ME must be a neurological disease, whatever else it might be (in some cases). The question then is whether neurology is in practice the right home for clinical care.
That's interesting - in Cort's interview with Dennis Mangan, Mangan also felt that neurology would be the best fit. Problem is, nobody seems to want us! The primary issue is research funding rather than care at this point - Women's Health has pretty much no budget and ME research funding is supposed to come from across the various NIH institutes but none of them cough up. The buck stops nowhere.

Not sure what to propose to Congress people to action to get us adopted by someone. We're a bit like the one tarantula in a pet-shop full of cute puppies.
 

WillowJ

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I'm still willing to work on the research funding goal - @WillowJ, would you work with me?
Hi @Sasha , thanks for thinking of me. I am not clear about what is needed.

I will help as I can, but I can't be an "in-charge" person because I can't reliably be around.

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...
 

WillowJ

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I wasn't meaning include that @Sasha just making a point unclearly that the equality/parity with other illnesses regardless of label is horrendous, we have been so marginalised that even when classed in Mental Health we were/are so marginalised that compared to other mental health illnesses our funding is horrendous. It's like a serious bioethics issue. It shouldn't matter where you fit so to speak, it's about the suffering and functional loss.
I agree with your point, but this disease has never been formally classed in Mental Health in the USA (however much it might be informally treated as a hypochondriosis or cognitive behavioural problem, even at times by NIH and CDC). Coding as neurasthenia instead of ME has been a point of contention in the UK, but it is not particularly relevant in the US. In the US, this disease is coded with "signs, symptoms, and ill-defined conditions", which doesn't speak to type of classification and to the best of my understanding, is not meant to contain a definite or end diagnosis.

So it seems inept to let it langush as an "ill-defined condition" for 39 years, with DHHS doing next to nothing to encourage research (or, um, use dedicated funds for other things, both without and with the knowledge of Congress, if I understand things correctly).
 
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aimossy

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@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. I hope my meaning is a little clearer. I was just thinking about the context of highlighting equality and parity in funding with other illnesses. I wasn't really thinking about points to do with where it should be classified or those complexities. I completely agree that it being 'languished as an ill defined condition' is also pertinent as a relevant problem.
 

WillowJ

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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.
I am totally on board with that.
 

Sasha

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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?
 

oceiv

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@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.
 
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WillowJ

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Can a US person tell me who/how many people represent each citizen in congress? Do you each have one congressperson plus one senator?
Every state has two Senators who both represent everyone in the entire state.

Each state has a variable number of House Representatives/ Congresspersons who represent a variable number of people, but each district has only one.

So any given person has one House Rep and two Senators.

Anyone can easily find theirs using a ZIP code or address in an official website like http://www.usa.gov/Agencies.shtml#Elected_Officials or third-party websites that can be found with a search like "write to Congress" or "contact my Senator"

For the 9-digit zip, put the address into here:
https://tools.usps.com/go/ZipLookupAction!input.action

This extra 4 digits not often used by the general public (and not required in most instances), but it helps the mail sorters, and some ZIP codes go to more than one Congressional district. So some people will need it, although others won't.
 

Forbin

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The congressional districts are supposed to be roughly the same size in population. Obviously there is variation, but each of the 435 members of the House of Representatives represents about 700,000 people. Congressional districts can change boundaries every ten years (following the census) so as to keep their numbers roughly equal. All states must have at least one congressional district, regardless of its population. Seven states only have one congressperson but two senators.
 
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oceiv

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I don't see links to the representatives' email addresses on opencongress.org, only to forms for online contact. The @opencongress.org emails aren't government email addresses. We'd have to find out if they work.

Edit: @WillowJ is correct that some zip codes are split between congressional districts. I'll edit my post above. Because redistricting is in most states (not all), run by whichever party controls the state legislature, they try to create the districts to best keep their party in power. This is why, for example, my congress member has changed.
 
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Sasha

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I put '10003' (a NY zip code for some restaurant) into that thing and it gave me two reps and two senators.

Ah well! I think the job of finding one of these things that (a) works and (b) coughs up email addresses is a task for a US person. Would anyone like to do that?
 

aimossy

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I think that this lego approach is very clever and considers the variance in patient views. It would enable something to be done regardless of differences. Someone highlighted in thread earlier that many saying the same thing in similar themes is just as important. It gives voice to all.

I think this has come about to basically start to develop an advocacy tool that is pretty friendly for all to use. Taking a lot of work out of the difficulty factor and energy factor. This idea is in need of a platform once it is more developed and I think that The MEAction Network platform could really enable this whole idea.

Just generally, in the US is it better to target any specific congress people or would it be best for people to choose from a listing that has their local representatives? I guess people would send like has been suggested to the health agencies concerned as well?

@searcher just tagging you to let you know about this thread.
 

Sasha

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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.

[...]

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.
I'm working on both the intro stuff and the research goal now. I think it's probably best to wait to see what I come up with and then invite comments it's always easier to talk about a specific piece of text.

I went through the whole thread last night pulling out what people were saying so I hope I'm going to cover the important points while still keeping things short enough to be read (by PWME and other supporters, not just the reps/congressors).
 

Sasha

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Just generally, in the US is it better to target any specific congress people or would it be best for people to choose from a listing that has their local representatives? I guess people would send like has been suggested to the health agencies concerned as well?
I'm doing my draft as though it's addressed to the reps/congresspersons, with the agencies copied in. I'm asking (given what people have said on this thread) the congressfolks to pressure the health agencies.

Edit: We can't ask people to send multiple emails so it's got to be addressed to someone - not a mix of congresspeople and agencies.
 

WillowJ

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I don't see links to the representatives' email addresses on opencongress.org, only to forms for online contact. The @opencongress.org emails aren't government email addresses.
It would be unusual to find an email address online. I think it's possible, because I see people with lists (though maybe they got these by asking staffers in person, I don't know). They say the best thing actually if using email would be to email the staffer in charge of what you're asking about, if you know who they are.

Generally the officials say the best way is through the fill-in form, because you select a header, and it gets routed appropriately.

It is more work to do each one separately, though. One can buy software (e.g. capwiz) that will communicate to all elected officials at once, with headers, through their fill-in forms.

Just generally, in the US is it better to target any specific congress people or would it be best for people to choose from a listing that has their local representatives?
It's best to write to your own elected officials, as they are the ones who are responsible for you.

However, it's also good to have people on key committees, because all legislation is written in committees and has to clear the committee before it ever comes to the floor. One can find the committees by going to the sites of the two houses. I've probably posted them before, but should be going to bed now.

I just wanted to it's unlikely any official email addresses would be findable on any of those third-party sites.