Cigana, I think you have the kernel of a great advocacy idea; thank you! We must find a way to keep our issues alive, and our (only) strength is numbers. I would add that
we must stop writing letters; we need petitions where someone writes a brief and cogent and targeted idea that we can vote on easily and send to the targeted person. That person would receive one email that says "100 people disagree with you." A weekly email of choices on which to vote would allow any individual or group to formulate a targeted idea and people could choose what ones for which they want to vote. The one thing we don't want is for people to keep writing long letters. Many people have not yet learned that writing long letters to CDC does nothing for the cause, and it can put a patient out of commission for days. Just look at where 20+ years of letters has gotten us. We are actually worse off than we were at the beginning 20 years ago; now the CDC is actively publishing psychobabble journal articles about us.
A weekly email of simple advocacy actions sounds fabulous to me. You are right, cigana; it uses our strength of numbers without straining us. With one caveat: it must be short, efficient, and simple. We must be able to send a message without exhausting or confusing ourselves. A petition is the way to do it, and a Geeky patient who still has their cognitive ability could organize the technology and a couple of others could edit the petitions. They must be simple and short and targeted.
I will send your idea to Medfeb, who is a healthy mom on another thread (
http://forums.aboutmecfs.org/showth...se-to-Unger-s-appointment&p=152113#post152113 )who is looking for ways to help. I think an organized weekly petition vote keeps topics alive, unlike most of our other actions which have been one time shots. For instance, campaigns against Dr. Unger's appointment, Dr. Jones inclusion on the committee, the CDC's inclusion of British shrinks in US policy making, etc., flair and then die. Dr. Unger, now in January, is continuing in relative peace and was appointed in spite of even the doctors' opposition and their letter writing campaign.
The weekly email might contain several options, any or all of which a patient could easily vote on a targeted petition. The votes could be tallied and reported to the email subscribers when they are sent to the target of the petition. Another strength that this uses is our variety of groups; no one has to agree with everyone else, yet the advocacy will still happen and on a regular and sustaining basis.
I don't see this as the only advocacy that we need, though. It does not fulfill the criteria of
causing a consequence to the targeted person. They are not elected officials; they don't have to respond to the wishes of their constituents. We would only be sending an opinion, but in a short and polite way that "The M.E. Patients" object or support a singular action. It's not one group with all their infighting; it is a simple point from "The M.E. Patients from Around the World". It is a small effort with a small effect, but it is better than nothing, constant, and is something all the patients who subscribe can do. We still need the war battles, like the lie-ins, the protests, the media exposes, and publicity about the blood bank exclusions, and the name change demands. But I'm excited about this idea, if someone can carry it out.
