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Home Newsletter Read Newsletters 2014-06 June - Summer has finally come to New England!!
2014-06 June - Summer has finally come to New England!! PDF Print E-mail

Summer has finally come to New England! With July coming soon, we can all enjoy some warmer weather, sunshine and fresh outdoor air.

If you live where you can have a small piece of ground you call your own, you can try a bit of Gardening for Health and Fun. This article describes ways this enjoyable outdoor activity can be made accessible to people of many skill and energy levels.

On a personal note, summer is often a more relaxed time when we can tend our relationships as well. Check out Perspectives On Friendship, and for those in a loving partner relationship, Intimacy and Love in Sickness and in Health.

We wish you all a season of rest, relaxation and restoration!

In the news

ME-CFScommunity.com announces new Youtube page. According to founder Dan Moricoli, the site "will not only provide high quality informational video from experts like Dr. Nancy Klimas and Dr. Kenneth Friedman among others, it will feature instruction videos to help the body to heal itself as well as a discussion section for the open exchange of information." Check it out here.

Advocate presses on in an attempt to gain access to the full results of the PACE trial under the Freedom of Information Act. Read more on author Erica Verrillo's website:  http://www.cfstreatmentguide.com/blog/the-big-lie

The fifth issue of Global ME Chronicle has just been issued, and it is chock full of information.  This free email "magazine" is put together by a small editorial team with contributions from many individuals from many countries. Anyone can subscribe by sending their email address to: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .  You can read the current issue and download past issues from the archive http://let-me.be.

Physican referral, our most important service

Are you a CFIDS/CFS patient, family member or friend who has a little time and energy and would like to help other CFIDS/CFS and fibromyalgia patients?

Do you have experience with the medical issues of the illnesses as well as the difficulties patients have finding physicians and other health care providers who are knowledgeable and caring?

We are in need of several:

VOLUNTEERS TO PROVIDE PHYSICIAN REFERRALS TO PATIENTS

With a minimum of time and energy, 1-2 hours a week, you could provide much needed help to patients seeking a qualified physician to provide diagnosis and treatment.

You would provide names of health care providers using our data base by either e-mail or telephone. It is then up to the patient to follow up on each suggestion and make an appointment if they so choose.

Initial qualifications:

  • Willingness to help other patients and their families
  • Able to respond to requests in a timely manner
  • Reasonable computer skills
  • Ability to interact with other patients both by phone and e-mail; listen to and assess their referral requests; and match their requests to health care providers in our data base.

We will train you in our physician referral process and help you along as you "learn the ropes." You will not be working alone, but as part of a team.

If you are interested in learning about this volunteer work, please contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or use the Contact Us link on our website and we will call you by phone.

Disability information – our most popular web pages

Coming soon – revisions to our highly regarded Disability Information pages, which will reflect changes due to the Social Security Administration's new Ruling dated April 3, 2014, Evaluating Claims Involving Chronic Fatigue Syndrome. This Ruling is now the legal basis by which Social Security evaluates CFS/CFIDS/ME disability claims and reviews for both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). This is a very important development for disabled patients who are unable to work and need to obtain Social Security financial and medical benefits. If you missed this last month, learn more here.

Advocacy

It has been some time since we have updated you on the Association's participation in advocacy work, but a great deal has been happening!

First, a shout-out to Donna Pearson, our vice-president, who was nominated by our Association and selected to serve as a voting member on the Chronic Fatigue Syndrome Advisory Committee (CFSAC). Donna attended her first meeting in Washington, D.C. earlier this month.
While many of us wonder how effective CFSAC actually is (or can be), we are all happy that Donna is there. If anyone of us can bring about some positive change, Donna can! She has already suggested some improvements, such as asking that issues raised by patients during the public comment period be considered for future agendas. Donna will be keeping us in touch with opportunities to participate.

To learn more about our advocacy, specifically CFSAC, Institute of Medicine (IOM) and NIH's Pathways to Prevention (P2), see our President's Letter, June 2014.

Many, many thanks to those in our community who are doing this important work. If you are not involved but would like to be put in touch with those who are, please Contact Us.

It's Not Too Late!

There are a few days left to make your contribution to our campaign to raise funds for Dr. Ian Lipkin's Microbiome Discovery Project. If you want to help this important research move forward, please register your contribution here by June 30. Thank you!

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