We had been discussing directing this action towards congress. Congress has the power to fix our patient access/discrimination problem, Congress passed the Americans with Disabilities act. They have amended it many times to include many specific disabilities and diseases, including AIDS, HIV, mobility disabilities and many more. If there was bipartisan will, this would be the quickest, most effective and least-taxing for patients' way to get this problem fixed. It would also be the most comprehensive way to fix it, as separate court cases only apply to specific scenarios.
Beyond that, most ME/CFS patients have neither the money, time nor physical ability to wage a court battle. I doubt any one patient would be able to get a judgment for years and years. If congress had the will to fix it, it could go into effect in a timely manner,
I'm concerned that one of the reasons our community petitions and advocacy actions don't get more than a few thousand signatories is that for example, research is not everyone's most-pressing need or goal. Each petition focuses on only one thing. There is a reason one-issue, world-wide political parties don't often win. Coalitions exist for good reasons. It's not easy for our friends and family who don't really understand why the research issue so affects us. In this thread alone, we had three different top goals. Why wouldn't we want to get those people to sign, too? I think my family and friends would be more likely to sign a letter with some goals that are easily understood without explanation. This is why
@aimossy 's post was so valuable. Also,
@Kati 's patient-acess phrasing was succinct, easily-understood and specific. I wouldn't have to take the time and energy to explain and summarize the issue, as I had to do with the Ampligen petition. We have to be inclusive both of our top community issues and of how potential signatories who know nothing will get motivated to sign our letter.
We had the discussion about the manifesto issue and decided on a compromise that we would reduce our goals. We were going forward with that compromise. We had about 7 goals - they were in bullet-point form and
got agreement from a bunch of people. Now we are talking about 3-4 goals. The rest of our initial points were internal matters to let each other know we're hearing each other and can work together despite differences. I think this compromise is reasonable, it seems to have support here and I think we should go forward with this compromise as we had been.
I'm also concerned that seeing that this my most-important goal and deal-breaker, that I'm putting time in and suggesting compromises, but something that we all agree should change isn't going to get changed due to a process disagreement. IMO, these process disagreements can be resolved and are less important than what is at stake, if we don't act. We could be fighting for what we need from our governments. If we compromised today, we could move on to the wording of our letter and our hard-earned discussions would be realized. We would have tangible progress towards getting this action done.
If the overarching theme of our letter is that we want government treatment equal to what other similarly-disabling diseases get, all the goals would fit the the theme. The theme is very easy for our families and friends to understand, without explanation. Research could be the first goal listed.
Edit:
@Sean , that point has not been made and is important. Could you expand a bit?
There was also an important point
@alex3619 made earlier and I need to go back and find it.
Back after a rest