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Home About Us President's Letters President's Letter – May 12, 2013 – What's Next?
President's Letter – May 12, 2013 – What's Next? PDF Print E-mail

I have looked up a little history about "May 12." May 12 was started in 1992 by patient and activist Thomas Hennessey to promote awareness for a spectrum of chronic immunological and neurological diseases, including ME/CFS, FM, MCS and GWS. He chose the date because it is the birthday of Florence Nightingale, who succumbed to an illness resembling CFS at age 35 and was bedridden the rest of her life. Tom originally conceived of May 12 as a "Lobby Day" when patients and their supporters would flood legislative offices with calls for action. This tradition of Advocacy continued for many years, with both national and local grassroots groups participating.

In recent years May 12 activities have focused largely on awareness, and today "Awareness" posters with blue (for CFS) or purple (for FM) ribbons, or both, are common. There are often events scheduled for the date to bring information about these illness to the general public.
In the last 20 or so years, our community has worked very hard and made many important advances, but also struggled to attain the respect, understanding, and research results that we all hoped would have come from these efforts. Letters to our elected representatives have not led to sufficient funding for research. Awareness campaigns have not helped all of our friends and family members understand us better. We cannot find health care providers who are informed about the illness.

The arrival of May 12 every year causes many of us in the patient community to stop and reflect, and this is a good thing. What should I be doing to help myself and others? What is our community doing and what can I do? Sometimes we find a way to participate and mark the occasion, if only by "liking" a Facebook page or signing a petition. Often, however the day approaches and then passes, leaving us with a twinge of guilt that we did nothing tangible when there is so much that needs doing (I speak for myself here!). What can we, as individuals and as a patient community, do to help make May 12 an occasion for the celebration of progress?

In addition to participating in Advocacy and Awareness in whatever way we can, what else could we be doing, as individual Activists or in groups, that reflects where we are now and points to where we can go from here?

Here are a few suggestions for how you can be an Activist (and see the Take Action links below).

1) Don't be alone. Even if you feel isolated, you can reach out to someone – by phone, through a support group, talking with a friend or fellow patient. If you are "wired" you may have already connected to online groups, or joined a local patient community such as our Association. There is strength and support in numbers. Those who work together to build the patient community need to know you are out there – why else would we do this work? If you are online, support patient associations or ME/CFS and FM causes around the world by voting for them in "contests" that provide cash prizes.

2) Be your own advocate. ME/CFS and FM are serious and complex illnesses, with known and measurable biological characteristics. They are not "all in your head," laziness, or "just depression." The treatment is not "pull yourself together" or "just exercise more." Any family member or "friend" who repeats these untruths needs some loving but serious re-education. Suggest some specific ways they can be supportive to you, and if you are an ME/CFS patient, ask them to look at the ME/CFS Primer to read about the biological basis of the illness.

3) Work with your health care provider. Yes, FM and ME/CFS are complicated illnesses that require time, patience and understanding. For doctors without much experience with ME/CFS or FM, your set of symptoms may seem overwhelming and not amenable to dealing with in a 15-minute appointment. But a doctor's ignorance of an illness is not a license to be dismissive of the patient. Go to your appointment prepared and take a copy of the Primer if you can. Be respectful, and expect the same in return. Offer partnership – you need to work as a team to find the best ways to treat and manage your illness. If you can create a partnership, you have helped to educate one more doctor, and that in itself is a huge contribution. If you cannot create a good partnership, you many need to look for a new health care provider.

4) Help raise money for research. After years of underfunding and slow progress, we seem to be in a breakthrough period for ME/CFS. New knowledge is coming daily. New researchers are joining established teams and new teams are forming. Private money is funding pilot studies which have in turn led to larger grants. Now is the time small dollars can have a huge impact, but in this economic climate those dollars have to come from us. If you don't have a dollar, or even if you do, ask someone you know to contribute on your behalf. Now is the time! Contribute to our Association's 2013 Funds for Research campaign. When we work together we can make things happen.

5) Help expand our community. Patients cannot do this work alone. Most of us are sick. We suffer from relapses and brain fog. Those of us who have been doing this a while are getting older (maybe we all are). We need patients to inspire and guide, and more healthy people to help with the work. Educating, organizing, leading, providing services, and communicating require specific skills as well as commitment and consistency. Our own Association, although we have grown significantly in recent years, can't take the next steps without additional help.

To do what the patient community deserves requires healthy people, especially family and friends, to step in and step up too. Someone you know may be good with computers, marketing and communication, websites or graphics, fund-raising, or have database or general office skills. Can you ask if they would volunteer a few hours a month to help you and others like you? If they can't contribute time, can they make a donation to help pay necessary expenses and support new, expanded programs? By asking, even if the answer is "no," you will have taken an active step towards helping yourself and others. Take another step and ask someone else.

On May 12, 2013, we know we can't expect federal or state government agencies to solve this problem for us, although they can be a big part of the solution. We have learned that awareness alone doesn't get results. If we become a community of individual Activists, taking specific steps such as those above, we can move forward together. Let's get started!

With warm regards,
Charmian Proskauer, President
Massachusetts CFIDS/ME & FM Association

Take Action
Massachusetts CFIDS/ME & FM Association
Information line (617) 471- 5559
Website www.masscfids.org

For more information on May 12, see the excellent review in ProHealth.

 
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