Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

MassME@40 — From the Archives — The Cookbook, posted in the June 2024 Newsletter

 As part of MassME@40 celebration we will be presenting a series of stories and documents from the history of our remarkable organization.

MassME 40 From the archives

 

The Cookbook

 

Did you know that MassME published a cookbook? Cooking with Ease --- Just for the Health of It was published in 1991 by our organization, then called the Massachusetts CFIDS Association. The book is 96 pages, with a few color illustrations, and coil-bound so it will lay flat on a kitchen counter. It sold for $8.95, with all proceeds ‘supporting CFIDS Research and Education.’ (CFIDS stands for Chronic Fatigue Immune Deficiency Syndrome, an earlier name for ME/CFS.)

Cookbook cropped

 

The publication of the cookbook was coordinated by Bonnie Gorman and Gail Kansky, who vetted and compiled recipes submitted by our members, particularly those who attended the in-person support groups. Each recipe is followed either by the name of an individual or of a support group, including groups from Springfield, Concord, Framingham, Greenfield, Wrentham, Newton, Manchester NH, Portsmouth NH, Randolph, Marlboro, Newburyport, Pittsfield, Brockton, Plymouth, Boston/Cambridge, Cape Cod, Worcester, Malden, and a Teen Support Group. Because the recipes come from people living with ME, they emphasize ease of preparation, and most avoid ingredients that are common causes of gastrointestinal issues.

All recipes were reviewed for nutritional content by Ruth Palombo, a registered dietician, and the book begins with helpful ‘Nutritional Guidelines for the CFIDS Patient,’ including a recommendation for six small meals a day rather than three large ones, a recommendation to restrict fats from the standard guidelines, but not too much (‘severe fat restrictions deregulate the digestive system’), and advice to avoid or reduce the intake of milk products, acidic fruits, and vegetables (high in fiber) to avoid dyspepsia and gastric distress. 

The book was compiled and printed by Cookbook Publishers (of Olathe, Kansas), and each section is prefaced by more general cooking advice, such as ‘A Handy Spice and Herb Guide,’ a ‘Meat Roasting Guide,’ and — less helpfully for our target reader — ‘Food Quantities for 25, 50, and 100 Servings.’

Some sample recipes:

 

Sunflower and Sauerkraut Toast

1 lb. sauerkraut, drained

4 Tbsp. sunflower seeds

2 small onions, dice 1 and slice the other

1 to 2 Tbsp. margarine

1 tsp. paprika (in two portions)

2 Tbsp. canola oil

1 to 2 Tbsp. chopped chives (garnish)

4 to 5 slices pumpernickel bread

Lightly toast and quarter the bread. Mix diced onion with 1 to 2 tablespoons margarine and ½ teaspoon paprika. Spread mix on the toast. Mix sauerkraut with sunflower seeds, oil, remaining onion, and paprika. Spread onto the toast. Bake the toast at 350° for 8 to 10 minutes. Garnish with chives.

- Sharon B.

 

 

Curried Stir-Fry

3 boneless chicken breasts, cubed

3 tsp. cornstarch

6 to 8 scallions, chopped

3 Tbsp. chopped walnuts or peanuts

1 chopped pepper

4 tsp. curry

2 tsp. sugar

3 oz. low sodium chicken broth

2 Tbsp. corn oil

Coat chicken with cornstarch. Head oil and stir-fry scallions quickly on high. Add walnuts and peppers. Stir for 2 minutes. Reduce heat to medium and stir in curry and sugar. Add chicken and stir-fry on high until cooked. Add chick broth and mix well. Serve over rice or pasta.

- Cape Cod Support Group

 

 

Papaya Cooler

½ c. mashed papaya

1 peeled lemon

1 peeled grapefruit

1 peeled orange

4 Tbsp. honey

¾ c. water

Crushed ice

Blend well and serve or freeze. It’s the perfect midday pick-me-up.

- Frank D.

 

And finally, some useful advice from the list of ‘Kitchen Hints’ at the end of the book:

‘An easy way to remove the kernels of sweet corn from the cob is to use a shoe horn. It’s built just right for shearing off those kernels in a jiffy.’

Bon Appetit!

 

 

MassME@40 — From the Archives — The Lending Library, posted in the Sept 2023 Newsletter

FINAL From the archives for website

 As part of MassME@40 celebration we will be presenting a series of stories and documents from the history of our remarkable organization.

This month, a brief history of the MassME ‘Lending Library.’

 

The Lending Library: Delivering Hope

MassME began in the early 1980s as a network of support groups – people meeting in person to share information, experiences, and advice about life with ME/CFS.* Information in the early years was scarce and hard to find, and people passed from hand to hand the few books, videos, and pamphlets that were available. Some of the support groups pooled resources to purchase and accumulate materials that they could then make available to group members.

EDIT Worcester ibrary Redacted

When MassME was formally incorporated as a 501c3 organization, these collections of resources became the Lending Library. Lorraine McDonough, Nancy Smith, Dr Lucy Dechene, Rita Sanderson, and Ken Casanova all worked on collecting and expanding the library over the years.

MassME members taking calls on our support phone line could recommend books or videos, depending on the caller’s need, and a list of available publications also appeared in The Update, our quarterly newsletter.

LIST1     

       LIST2   

  LIST3

Recommendations and requests would then be passed along to the ‘Librarian’, who would either send the material in the mail or deliver it in person to the requester’s house. Marilyn Cathcart, Giovanna Del Deo,and Pat Kearns were librarians in the early years of the organization. Phil Chernin, who was librarian from 1989 to 1992, remembers that he tried to deliver as many books in person as possible. Requesting individuals were in very difficult health circumstances, and, as he was himself in a period of mostly functional remission, Phil felt that he was delivering not only much-needed information, but also hope.

“It’s hard to convey the hunger for information at the time,” said Phil. “There’s such a difference between then and now, how we casually receive and absorb information. People back then would hear about a book, but there was no way to access it.”

Both books and videotapes were available in the Lending Library, but Phil remembers the books most clearly. Here are a few of the titles that he remembers as having the highest circulation during his time as librarian. You can see the wear of many hands on the covers of some of these books.

From the Archives book list 

Phil remembers the impact that seeing the cover of a book with the name of the illness on it could have for those newly diagnosed and their families. The support groups provided an important validation of people’s individual experience, but a published book held a different kind of validation and authority.

 

Do you remember receiving material from the lending library, or a visit from a MassME librarian? Or perhaps you were a librarian yourself? If so, please get in touch! We would love to hear your story.

We are interested in finding a way to make the collection available again to researchers and the public. If you would like to help with this project, please volunteer!

 

*The illness has, of course, been known by many different names throughout its history, as has our organization, but we will use the current term, ME/CFS, and name, MassME.




Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.