Back Talk: Raising Awareness about Myalgic Encephalomyelitis (M.E.)

Editor’s Note: Welcome to our letters to the editor page. Here you’ll find reader comments on Advocate articles and other news. We collect readers’ opinions from emails, letters, Facebook comments, and comments to Want to get in on this? Email and put “BackTalk” or “letter to the editor” in the subject.

Raising Awareness about Myalgic Encephalomyelitis (ME)

Many readers commented and responded to the article “Changing Lives While Living with M.E.” (Valley Advocate, January 4-10, 2018). Here are some of the responses:

Thank you for writing an informative article regarding myalgic encephalomyelitis (ME) and highlighting the efforts of Erica Verrillo and Rivka Solomon — two tireless advocates, who are working to get accurate information to patients and providers alike. I was lucky to meet Rivka at the recent Open Medicine Foundation research report meeting, End ME World Tour presented by Linda Tannenbaum. I am a ME patient from New York State and traveled to Boston in search of more information. This article, community forums, and the documentary, Unrest, are invaluable. The majority of ME patients are not diagnosed and once diagnosed it is difficult​ to secure care. More articles like this are urgently needed both to help patients and to alert providers to some of the promising developments that just beginning to emerge — a powerful antidote to the longstanding avoidance of ME.

—Susan Taylor-Brown, email

Thank you, Valley Advocate and Erica Verrillo for this enlightening article. This is an awful disease that gets almost no attention in the media, it is rare to find such a well-written and informative paper on M.E. In any publication. Thank you for running such a good one.

—Pat Keshen Mayer, website comment

I have had ME for 15 years, 12 of which went undiagnosed. I’ve lost my job, my home, and my social community. I live with my parents, and spend most of my time alone in bed. Had I seen an article like this years ago, I may have been able to figure out why I was so sick and planned better for long term disability.

Thank you Chris Goudreau for reminding me that I am not alone in this struggle. And thank you for helping to educate the public about my invisible illness.

—Robie Robitaille, website comment

The Mystery of Energy Efficiency

Not that long ago, I was having my home insulated and it seemed miraculous that out of a $5,000 job, all I had to pay was around $1,250. On top of that, I got about 20 free LED bulbs that are reducing my electricity bill noticeably. I found myself marveling about these incentives to a friend: “The utility companies seem to be shelling out thousands of dollars to their customers. There seems to be lots of money in Massachusetts for energy efficiency.”

The reply came quickly: “Well, it’s really not a miracle. The state makes sure that the utilities add a surcharge on every household’s electric bill and that money is handed back to customers in the form of energy efficiency audits and improvements or assistance in energy expenses.”

Curious? Have a peek at the back of your electricity bill and you will find that every month, depending on your energy use, you are paying into a fund for energy efficiency and green power.

The so-called energy conservation charge is collected and then returned back to customers through energy-efficiency programs, services, incentives, and rebates — the benefits you have access to when having an energy audit through the utilities’ programs, insulating your home, or replacing your appliances with more efficient models. If you are a customer of any of the major utilities, you can easily calculate how much you personally have been paying towards the utility’s fund.

So in a certain way, without doing a thing, you are already participating in moving Massachusetts towards a less costly energy future.

And doesn’t this make energy efficiency even more of a no-brainer?

Relatively few people actually make full use of the programs so far. It’d be in all of our interest to change that!

—Uli Nagel, program manager of ener-G-save

Author: Advocate Staff

Share This Post On

Sign up for our daily newsletter!

You don't want to be left out, do you?

Sign up!

You have Successfully Subscribed!