FDA ACTION ON EXTENDED-RELEASE GUAIFENESIN

I am a citizen of STATE and I suffer from a condition called Fibromyalgia Syndrome (FMS).  This is a disease afflicting NUMBER of Americans.  Many sufferers have seen their lives degenerate to the degree where they can no longer work, care for their families, or even look after themselves.  I write my story, in brief, to illustrate how important it is that FMS sufferers have access to the medication that has enabled so many of us to resume a meaningful life.

I am PUT IN CURRENT BASIC STATISTICS (e.g., age, children, employment).  I have had FMS for (LENGTH OF TIME) and (mention other family members who have fms) also suffer from this disease.  We have found only one medication effective in reversing our symptoms and giving us hope of a normal life.  That medication is guaifenesin.

Before finding guaifenesin, I was DETAILS OF NEGATIVE EXPERIENCES (e.g., unable to provide parental care for my children, engage in the full range of relationship responsibilities and rewards of partnership with my spouse/partner, unable to maintain a job, unable to cook/clean house, unable to engage in sport/recreation, unable to participate in family events, etc.). 

EXPAND ON THE MAJOR THINGS:  for example

Before I was as advanced in FMS as eventually occurred, I was working full-time as a nurse.  My career was an important part of who I was and how I valued myself.  It also provided me (and my family) with the income necessary to maintain a decent standard of living.  My children had a mother/father, who was able to give them the care and attention they needed, capable of attending school and recreational functions, or organising their activities, supervising and helping with their homework, participating in their relationships with their friends.  These, and the countless other ‘pieces’ that make up an ordinary life, were things I took for granted, although never thought unimportant.

Then my FMS progressed to the stage where these aspects of life were lost to me.  This disease took the joy and responsibility of my work, my parenting, my partnering, my extended family/friends relationships, my recreation, away from me. 

ADD DETAILS THAT ILLUSTRATE YOUR LOSS EXPERIENCE

I sought help from too many doctors to count; I tried every option available.  When medical science failed me, it didn’t just say it couldn’t help me; it told me I was a lazy, hypochondriac who just liked to be the centre of attention.  This disease, with the collusion of a medical profession hostile to what it can’t ‘solve’, took away my self-respect.

Then I found guaifenesin.  This medication has given me hope.  It isn’t a cure for FMS but it does something nothing else has done; it reverses my symptoms.  I am now (for example:  able/hopeful of being able to work again.  My marriage/partnership relationship now flourishes and I now take care for my children’s emotional and practical needs  again.  I am able to take walks, participate in my community, help others) and generally look forward to something like the life I’d expected to live before FMS attacked me.

The FDA has withdrawn most extended-release guaifenesin products from the market, allowing only 1 product to survive.  I have tried many products in my search for the one that works for me.  I am devastated that a government agency, run by officials not elected by the people, has the power to interfere with my right to choose the guaifenesin I prefer, given that none of the products removed from the market have any reported safety problems.  No ‘one’ guaifenesin product has proven effective for all of those following the guaifenesin protocol and there is no reason to believe that Mucinex (the one product allowed by FDA) will prove universally effective either.

I attach, for your information, the letter sent to the FDA by the International Guai-Support Group Network, of which I am a member.  This letter explains my concerns more fully.  It explains the need for a variety of products to be available for FMS sufferers.

I respectfully request that, as my representative, you support my right to access medication that is safe and necessary for the treatment of Fibromyalgia and which has already had such a positive impact on my condition and my life.   

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