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Ren I guess I am confused why you seem to object to members taking advantage of all avenues to raise awareness and try to get positive patient oriented change implemented. Many of the members here have been diagnosed with CFS/ME/FM for years before learning they have Borelliosis and coinfections. I have in the past encouraged members to support efforts to raise awareness and funding for CFS/ME/FM.
That working group is under the control of government agencies (similar the the agencies and doctors in the UK that serve more as obstacles to progress for ME patients) and they will extend an invitation to a minority of people representing patients and their doctors. Those brave people will be in the lions den working at a snails pace. This woking group is not required to produce anything reportable for 3 years and then they are required to report every 5 years after with updates.
I am happy there is a working group established to investigate issues associated with lyme and coinfections however im not impressed with their charter. The charter doesnt specify who the non government agency participants will be, they may not be lyme patient advocates. We will not know if those selected as lyme advocates really are until they have been selected.
BTW, there are a lot of initiatives related to CFS/ME, this is just one site listing many
http://solvecfs.org/category/government-advocacy/ I would never get on a thread and suggest members should be satified to do nothing else because all of these initiatives exist currently for CFS/ME. You seem to be suggesting members with lyme should satified that this working group exists. If you are familiar with government sponsored committees most are not very productive except spending taxpayer dollars. The difference with this petition is the resulting panel should be citizen, patient oriented not lead by government agencies that have a history of antagonism towards lyme patients, their doctors and scientists trying to make real progress to benefit lyme patients directly.
Regarding your comment on the monetary support for lyme vs cfs, this is not a competition and your comment seems to imply lyme patients again should be quiet because their illness has a higher ESTIMATED funding for 2014. First that is estmated funding. Even if you look at prior years you will see taxpayer dollars being given to many schools for research but very little of it is patient oriented. Im sorry but there are some scary things (e.g. putting OpsA in rice to control lyme disease, research salivary glands of ticks) they have funded but how much of it has trickled down and made any real difference.
That working group you linked has 3 years to produce a document on lyme related issues....3 friggen years. According to new admission from CDC that would be nearly 1 million more people infected with lyme and have their health and lives turned upside down waiting for this working group just to produce a paper.
so I dont really understand why you are posting these links in the Lyme subforum implying additional efforts to raise awareness are somehow not warranted. I personally want more funding and awareness for CFS ME FM LYME. After all that many of us have suffered and lost due to current lyme and coinfections guidelines and ignorance of general practitioners I for one will take advantage of every opportunity to raise awareness regarding the lack of effective testing, proper diagnosis and treatment.
Sorry if you disagree but I dont see this as a zero sum gain or as a competition between our illnesses. Our illneses have more in common then not. Im for increased awareness for all these invisible illnesses but this effort just happens to apply to lyme and coinfections which is why I put it in the lyme subforum.
I did not reply to your first comment but you commented again and I just dont get your point or motivation ??
