Do we have any hope???..are we doomed for ever??

[onlyhope]

Do you believe class action lawsuits will solve our problem?
will any solution ever come out of the lawsuits besides the settlement money?
will the court order merck to look into our problem and findout a solution?

Don’t we have any hope other than putting ourselves in the doctor’s seats ourselves and shooting things in the dark?

This forum/our lives have been depicted in the media,but is it enough?
can we get nytimes/wsj to write about us?

Do you have honestly think we will ever be cured?

I used to have lots of hope for the washington university case study,that finally people will come to notice us and solve our problem.Now that it has been released and not much buzz has hapenned… I have lost all hope

what do you guys think we should do now?

[bluecloud87]

Because we are such a small group i doubt anyone really cares. I am just waiting for the study and seminar to blow over and then god knows what.

[onlyhope]

which study and which seminar do you mean??

[bluecloud87]

Molecular study on PFS - results are due in a few weeks.

viewtopic.php?f=33&t=5282

Seminar in Italy

viewtopic.php?f=29&t=5416

[onlyhope]

Is there anything we can do without depending on others?

[bluecloud87]

Have you tried any particular exercise routines or diets for longer than 4 months? those options and being your own doctor are really the only things we can do independently.

You asked whether i think ‘we will ever be cured’. I personally don’t think we will ever see a universal treatment for PFS, if anyone recovers it will be from time or there own treatment, in my opinion. I guess the best thing we can do is get on with our lives regardless.

[martinM]

This thread is pointless at best. You ask general questions like a sensationalist talk show not interested in anything but generating controversy.

If you’re looking for a plan of action further research initiatives there is more in progress, however PFS is multifaceted and very complex.

What have you done specifically to augment understanding of PFS and how to cure it? What about furthering information? Have you contacted any media? Are you pursuing legal action? These messages speak the loudest in gaining support for research for a cure. Share what you’ve done or what you can do to forward the cause rather than posting pointless drivel that clogs up the forum. If anyone wonders where long-term sufferers go, it’s away because of threads like these.

@onlyhope

Do you believe class action lawsuits will solve our problem?
will any solution ever come out of the lawsuits besides the settlement money?
will the court order merck to look into our problem and findout a solution?

Don’t we have any hope other than putting ourselves in the doctor’s seats ourselves and shooting things in the dark?

This forum/our lives have been depicted in the media,but is it enough?
can we get nytimes/wsj to write about us?

Do you have honestly think we will ever be cured?

I used to have lots of hope for the washington university case study,that finally people will come to notice us and solve our problem.Now that it has been released and not much buzz has hapenned… I have lost all hope

what do you guys think we should do now?

[onlyhope]

@UK20

Have you tried any particular exercise routines or diets for longer than 4 months? those options and being your own doctor are really the only things we can do independently.

You asked whether i think ‘we will ever be cured’. I personally don’t think we will ever see a universal treatment for PFS, if anyone recovers it will be from time or there own treatment, in my opinion. I guess the best thing we can do is get on with our lives regardless.

yes…I have been on naturopathy medication prescribed to me via hair mineral analysis since march 2011
i have been taking supplements for adrenal fatigue,hypothyroid,immune system deficiency and for toxic mineral removal
but not for ED

I have read the book “The Edge Effect” and i believe it has many ideas of how our neurotransmitters in the brain can cause so many side effects we all face now.

I will post the summary in the “theories” section with in 48 hours

[onlyhope]

@martinM

This thread is pointless at best. You ask general questions like a sensationalist talk show not interested in anything but generating controversy.

If you’re looking for a plan of action further research initiatives there is more in progress, however PFS is multifaceted and very complex.

What have you done specifically to augment understanding of PFS and how to cure it? What about furthering information? Have you contacted any media? Are you pursuing legal action? These messages speak the loudest in gaining support for research for a cure. Share what you’ve done or what you can do to forward the cause rather than posting pointless drivel that clogs up the forum. If anyone wonders where long-term sufferers go, it’s away because of threads like these.

@onlyhope

Do you believe class action lawsuits will solve our problem?
will any solution ever come out of the lawsuits besides the settlement money?
will the court order merck to look into our problem and findout a solution?

Don’t we have any hope other than putting ourselves in the doctor’s seats ourselves and shooting things in the dark?

This forum/our lives have been depicted in the media,but is it enough?
can we get nytimes/wsj to write about us?

Do you have honestly think we will ever be cured?

I used to have lots of hope for the washington university case study,that finally people will come to notice us and solve our problem.Now that it has been released and not much buzz has hapenned… I have lost all hope

what do you guys think we should do now?

I am sorry mate to have given the wrong impression.
It’s just that i get in to so much negativity sometimes i think ‘no body will ever take seriously’

[bostonusa2009]

One thing that I feel I am learning as I push on and get more tests done and see more doctors every month is the damage this drug caused is very complicated. There are many different area’s of the body that could have been damaged. Obviously the sex organs & prostate; but also the stomach, liver, thyroid & hpta communication and who knows what else.

We are all grouped in together when we think about this problem, but some of us are much worse than others. IMO those of us that took this pill longer will have a longer uphill battle with getting back to close to normal, as there could be several problems to deal with.

Do you believe class action lawsuits will solve our problem?
will any solution ever come out of the lawsuits besides the settlement money?
will the court order merck to look into our problem and findout a solution?

It certainly isn’t going to solve our problem, but it could help improve the quality of your life.

Fist thing you should understand is these types of cases are very complicated and usually take years to simply get to a point of settlememt. Even then, there is an appeal process that can take years.

I have never heard of such a ruling and I couldn’t imagine it happening. Besides, It wouldn’t be in our best interest to have Merck involved in this. Would you trust this company to work on a cure for us?

[prop]

@martinM

What have you done specifically to augment understanding of PFS and how to cure it? What about furthering information? Have you contacted any media? Are you pursuing legal action? These messages speak the loudest in gaining support for research for a cure. Share what you’ve done or what you can do to forward the cause rather than posting pointless drivel that clogs up the forum. If anyone wonders where long-term sufferers go, it’s away because of threads like these.
]

don’t blame him

these r legit questions without reply

one thing that we could do is try to contact researchers in our countries and
sensibilize them on the problem

i tried