It is with great sadness & regret that I have formed this opinion, but having seen the efforts and investments made both financial and otherwise over the last two decades in attempting to lobby the FDA or Global medical equivalents in taking CFS/CFIDS/Fibro/ME serioulsy, it doesn't appear that this banging our collective heads against the wall is paying any meaningful dividends.
If anything its merely re-enforced an empirical disconnect, skepticism and clinical mistrust between those working at the coal face and living with this crippling illness, and those whose empirically dominant views define almost every level of CDC & FDA decision making.
Thus I've formed the view that lobbying the FDA and equivalent continues to get us absolutely nowhere
I agree.. we need to do far more then lobbing CDC and FDA as that approach by itself hasnt got us anywhere during the past 20+ years. The amount things has truely moved forward by them is virtually nil.
for all the cost and efforts involved, maybe we should instead consider focusing our attentions on lobbying those drug companies whose profit motive's and brilliant lobbying prowess is far greater than our own, and whose products can be re-patented for a whole new condition/disorder/illness.
Its far easier for reputable (well connected and very influential) drug companies to seek approval for later stage trials of previously developed/approved drugs, not unlike Gabapentin conversion to Lyrica, and from a drug company's perspective; it would not be deemed prohibitively expensive for such open clinical trials to be initiated if it were made clear the number of patients and return on investmnet they may secure with comparitively little outlay to say a compound's creation in a lab up to FDA phase III-IV approval for market sale.
So would it be prudent of us as a community to consider a slightly less glamurous option to achieve our objectives by actively lobbying those Drug companies whose products we identify as holding value and having them push our agenda as their own
Well that is the BIG ISSUE.. there isnt much at all in the way of drugs which fix ME patients. Yeah there is a few drugs which can treat "symptoms" here and there but nothing really which helps our whole illness. If there was.. subgroups of patients would be saying they were cured or to be on such and such drug eg Klonopin is a common one many of us find helpful..but a drug company wouldnt thou be even able to push that at all as any kind of cure rather then being a slight benefit to some. Even the antivirals, only work for a select few (and still often dont cure patients).
Ampligen is so far the first drug ..that is really holding hope for some.
IF there was a drug which looked hopeful for a large group of us.. yeah then pushing a drug company on our success with it may work and help things.. but a drug company thou they do have a LOT of money those big ones, they are not going to start up any study which will cost them unless they believe it may "pan" out (they are about making money, money, money and not making decisions which may be losses, so unless they are really hearing about patients having a lot of successs, which Im sure if that was the case, we in forums such as this would be hearing about too.. .unless that is happening, I dont think a study would be even done.
Without a hopeful drug.. or a drug company who has the funds to do studies on thier hopeful drug.. we are screwed.
Other then possibly Ampligen, did u have another drug you thought would be suitable for the drug companies to study in us in which there would be enough improvement in most of us for them to call a study a success?
Another way I believe we can help to change things, is to get more of the ones who can make a difference to us aware of us and our plight.. eg more researchers interested in ME/CFS and interested in doing studies (as our symptoms and and abnormalities are so wide ranging, our illness could be covered by MOST research fields..but where is all our research???). The issue we have is more then just a lack of funding but also a big lack of those who want to do ME/CFS research, I think mostly cause most are unaware about the things which occur in our illness (other then all the psych stuff they always hear)
If we can get more medical people interested in us and our condition..maybe a push for us and for more studies to be done, more funding needed etc etc, could come actually from them. This is the avocacy area Im currently focused on re my peaceful protest at the biannual Australian Research Conference over the fact that ME/CFS research isnt even being presented at all at the big medical research conferences... its completely missing an important large medical advocacy platform the other illnesses get. All our biological research goes rather unheard and with no push to help bring follow up studies or interest in.
Making researchers aware that ME/CFS could be a very interesting illness for them to be studying and making them more aware about us and our reality, I think is a far more easier thing to do then "us" trying to change the CDC and how it is. Maybe the CDC would change, if there was an increased interest (could we even go as far as make our illness somehow "trendy" to be studying?.. the last great unknown? a minefield of discoveries waiting to be made) and a push throu the medical people to gov depts like CDC..