Stuck? Four Months of Almost Nothing

In this “op ed” piece, Dr. Alan Gurwitt, Chair of the Medical Advisory Committee and past President of the Massachusetts CFIDS/ME & FM Association, outlines steps for more patient/advocate coordination and strong action in response to the IOM and P2P reports. Read it here.

Upcoming Events

P2P (NIH Pathways to Prevention) final report release
Tuesday, June 16, 2015, 11 a.m. EDT. NIH to host telebriefing to discuss panel report from Pathways to Prevention Workshop: Advancing the Research on ME/CFS. All interested parties are welcome to listen in, but the panel will only be accepting questions from members of the media.
Telebriefing Phone Number: 888-428-7458 (U.S. and Canada)
, 862-255-5400 (Other International Callers). Please reference the NIH Pathways to Prevention program on Advancing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Shortly after the conclusion of the telebriefing, an audio playback will be available for a four week period. Audio Playback Phone Number: 888-640-7743 (U.S. and Canada), 754-333-7735 (Other International Callers). Enter replay code 118646. 
Get more information on the workshop.

Upcoming webinar: “Post-Exertional Malaise: History, Characteristics and Research Findings”
Thu, Jun 18, 2015 1:00 PM - 2:00 PM EDT. Presented by Lily Chu, MD, MS, Co-Vice President, International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. In this webinar, Dr. Chu will provide background on the origination and evolution of PEM and offer pointers on how patients can talk to their physicians about it for better understanding.
Register here.

Patient Voices - Surveys

“Early Onset Symptoms” survey conducted by Massachusetts CFS/ME & FM Association.
Will the criteria in the IOM report lead to a prompt and correct diagnosis in the early months of the illness? Find out how well they fit in this summary of the experiences of 800 patients. See the results here (survey is closed). NOTE: this is not a scientific survey designed as a research study, but the results are intriguing and suggest many avenues for future research.

Open Survey: “What Triggered Your Illness?” sponsored by ProHealth. 
“Editors Karen Lee Richards and Erica Verrillo are conducting a survey to explore triggers in ME/CFS and fibromyalgia. We would also like to understand what patients themselves think is the underlying cause of their illness. While researchers hunt for causes in the lab, it is worth asking patients what they believe. Patient experience is the bedrock of clinical discovery.” Take the survey here.

ProHealth’s survey on Work and Disability. Last month ProHealth conducted a survey on Work & Disability in Fibromyalgia and ME/CFS. Results of the survey can be viewed here.  The survey is still open (as of 6 /10/2015).

“What is Your Response to the IOM Report?” survey by Massachusetts CFS/ME & FM Association.
What’s good about the report? What is problematic? How can the results be best used to move us forward? All responses to this survey were provided to the members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) IOM Working Group. See a sampling of the responses here. (This survey is closed.)

Exciting new research

New test for all viruses
A new blood test can reveal nearly every virus a person has been exposed to. Developed by Dr. Stephen J. Elledge at Harvard and others, the test is still experimental but no doubt will be developed for general use and is expected to be low-cost ($25). This has enormous implications for many diseases, and has already been tested with ME/CFS patients (thanks to the Solve CFS/ME Inititive). 
Read the abstract and summary of the article, and several news reports on this work.
New test could reveal every virus that's ever infected you, Science, June 4, 2015
Every Virus a Person Has Had Can Be Seen in a Drop of Blood, Researchers Find, New York Times, June 4, 2015
Quantum Leap in Viral Detection Could Impact ME/CFS and Fibromyalgia, Simmaron Research, June 7, 2015

New blood test for Irritable Bowel Syndrome 
IBS, a common occurrence in patients with ME/CFS, can now be quickly diagnosed with new blood test, saving patients from more invasive testing. Read more here.
...And the FDA has approved two new drugs for the treatment of IBS with diarrhrea (IBS-D). Learn more.

Fibromyalgia Research (spoiler: not great news)

Are inflammatory cytokines linked to Fibromyalgia pain? A recent study suggests new avenues for research. 
The Comparative Burden of Chronic Widespread Pain and Fibromyalgia in the United States (abstract only). Fibromyalgia patients bear a greater disease burden than those with chronic widespread pain without fibromyalgia.

Fibromyalgia pain may be linked to pro-inflammatory cytokines, oxidized LDL levelsRead more.

Living with ME/CFS and Fibro

Day 22: 31 Days To A Better CFS Life – A Letter To Partners Of People With CFS / ME
Although written to male partners of female patients, this applies equally to carers of all patients. 

For more suggestions to carers, see 10 Rules for Those Who Love CFIDS/ME and FM Patients.

What you can do today

Last call for Funds for Research
It’s not too late to make your own contribution to research! Our Association will collecting your gift of any size until June 30. All contributions from this campaign are being sent to support the work the Solve CFS/ME Initiative, including the biobank. These are the folks who arranged for Dr. Elledge to test his new virus test on ME/CFS patient samples (see article above).

Contact Your Congressional Delegation – Share Llewellyn King’s Article 
"A Job for a Lone Congress Member: Speak Up for a Forgotten Disease" by Llewellyn King, published on The Hill’s “Congress Blog,” June 2, 2015. This page has easy instructions for sharing with your congressperson.

Bookmark our Facebook page

This newsletter is only published once a month, but our Facebook page has new postings every few days! Check there for breaking news and most recent updates. You don’t need to have a Facebook account to see our page, but you do need to use the full URL, so bookmark it in your browser for easy access.

Support Massachusetts CFIDS/ME & FM Association

Forward this newsletter so your friends can sign up for themselves

Become a member

Donate or Volunteer

Sign up for Amazon Smile
Contribute funds to our Association at no cost to you! A portion of the sales price of most items you buy from will be sent to our Association every quarter. To set this up, click above or click the Amazon Smile graphic on our home page.  Search for Massachusetts C F I D S Association in the charities list, and be sure to put spaces between the letters C F I D S. Then start your shopping from