As Rome Burns, We Fiddle Away
First off, the information in this post is a communication to all the Fibromyalgia, Chronic Fatigue Syndrome, Lyme, GWS,GWI, Gulf War Veterans patients and their groups and blogs and not just here on Phoenix Rising. This information will be picked up by the various search engines.
Here is the problem with the current HSS contract awarded to the IOM :
The Gulf War Veterans had a Congressional Mandate and huge support from members of Congress. They had 15 years of scientific data; they had powerful groups including the news media backing them; they went throught the same dog and pony show of nominating their members that we are currently going through but to no avail.
The script has been written, the plot is in place, the ending is known. Now, they are just recruiting the bit players for thier 'staged' production.
After the fact of the outrage from the VA Gulf War Veterans patients, hearings were conducted (by the way, this is a tatic used by the administration to allow the veterans to vent without any action taken on their behalf), newpaper articles were written to no effect. This is a typical political ploy or manuvering by politicians.
But, the final process has been decided on how to treat the Gulf War illness within the medical establishment and by this administration.
Once the decision is in place it will not be overcome anytime soon.
The IOM raised the bar so high with regards to causation, that most data fell within the psychogical/social sphere
In comparison, the ME/CFS patient community is extremely weakened in a far greater degree on this issue than the Gulf War Veterans. We are less well known and do not have the power advocacy groups as the Gulf War Veterans.
The decision is a foregone conclusion. Writing to Congress will not avail the ME/CFS group much leverage.
Petitions mean nothing to this administration other than the possibility of news organizations suddenly showing an interest so please do keep signing away! It is important. However, this is an Executive Branch decision.
To my knowledge, there are only three successful strategies that can be employed given short time frame.
1. Injunction for Relief
2. Get this information out to the social media and the news media outside of the patient groups. Something that will go viral on the internet. Something similar to 'Act Up'as Lipkin pointed out to our group. He inferred our group needed shock value. I suggest to start referring to the IOM panel as a 'Death Panel' (
which it really is...death to future medical research, death to medical treatment, and eventual death to patients for lack of treatment) a tactic used by opponents of Obamacare which created staging point for conservatives to rally around. It would embarrass HHS and the Executive Branch. This issue should be at the forefront of every blog post now until resolution of this issue!
3. Monitor and document the process for later litigation. This means monitoring by outside groups such as news media organizations so HHS and IOM will be cognizant about this constant surveillance.
The lack of Critical Mass and the tepid response from this community is disheartening. This is a life and death issue for patients.
This will determine your care for the rest of their life! We have 230 people signing on PR at any one time and most of you are posting about treatments or complaining about your illnesses.
This should be the primary focus of everyone. Why? Because it raises this issue within social media.
In Google or other search engine results, it causes the issue to trend toward the top of searches. But so far we have only produce an anemic response to this critical issue.
So I have become disheartened and I'm disengaging from this cause. I cannot help people that are unwilling to help themselves! I know that most are sick but if you can post on here about treatment options or complain about your symptoms, than you certainly can make a posts to support or discuss this issue and to raise awareness in other social media circles! The postings must be
continue until this issue is resolved in our favor! Your life and treatment is dependent on this issue.
Every post on here, Twitter, Reddit, Facebook, YouTube, Blogs raises this issue in the social media world! It raises the issues in search engine results. Media organizations keep track of trending topics and issues and then report on them. If this issue is buried in the social media world, than this cause is going nowhere.
I measure the statistics.
Every Fibromyalgia and ME/CFS, Chronic Fatigue Syndrome patient must blog this on their post continuosly until we have a favorable resolution.
To date, the response has been less than stellar.
5 or 6 comments on major blog sites is not signicant! There are very few blogs posting on this from the communites that have the most to lose: Fibromyalgian and ME/CFS.
We have to resort to political guerrilla warfare tatics which means harnassing the social media to our benefit.
Final Note: It usually comes down to the 10% of the people doing most of the work. It becomes tiresome after awhile for those who do the work. I must report that the advocates are getting tired from shouldering most of the work. Many are sick like yourselves and cannot continue addressing this critical issue unless more of you contribute. Many are getting discouraged. This issue will seal the fate of the ME/CFS community in the foreseeable future.
I am speaking just not to this community but to Fibromyalgia and Chronic Fatigue patients everywhere on the internet.