- Last Updated: 18 December 2016 18 December 2016
We know ADVOCACY WORKS (see more below).
You can help if you ACT NOW !!
A letter in support of ME/CFS research to NIH Director Dr. Francis Collins, sponsored by two Representatives from California, is now circulating in Congress (House of Representatives) and we need as many U.S. Representatives as we can to be co-signers. Please CALL and send a FOLLOW-UP EMAIL to your U.S. Representative (not your Senators) and urge him or her to sign this letter. Complete instructions, including a phone and email script which you can personalize, can be found here. The number of calls to each Congressional office to make this request really matters. Your Representative may not be inclined to act as a result of one or two calls, but 10 calls will make a strong statement. Please call right away. The deadline for your Representative to sign the letter has been extended to Wednesday, Sept 7, 2016.
This action is the result of months of hard work by #MEAction, Solve CFS/ME Initiative, and the U.S. Action Working Group Congressional Committee, of which Massaschusetts CFIDS/ME & FM Association is a member.
GET and CBT have been downgraded as treatments for ME/CFS as a result of follow up work by the Agency for Healthcare Research and Quality.
In the initial Evidence Review prepared by AHRQ as input to the Pathways to Prevention (P2P) report commissioned by NIH, studies evaluating the effectiveness of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) which used subjects meeting only the Oxford case definition (6 months of fatigue). Based on the initial inclusion of studies using the Oxford definition, notably the PACE trials, the Evidence Review suggested that GET and CBT were "moderately effective" treatments. The P2P report recommended that the Oxford definition no longer be used, and the PACE research has come under increasing criticism for its methodology.
As a result of advocates requests, AHRQ re-analyzed the evidence for GET and CBT, without including any studies based on the Oxford definition (e.g. PACE). The conclusion was that there was no evidence to suggest that GET or CBT were effective treatments for ME/CFS. Read more here.
This outcome is the direct result of repeated requests to AHRQ by advocates. Advocates' next step is to make sure that this change is strongly noted in future medical education materials, particularly the websites commonly used by doctors, such as the Centers for Disease Control and Prevention (CDC), Mayo Clinic and Up To Date.
Ampligen has been approved for use for severe ME/CFS patients in Argentina
While advocates continue to press for approval of Ampligen in the U.S., the drug has been approved for use in Argentina, a country which has a rigorous drug-approval process similar to the U.S. This is the first-ever approved drug treatment for ME/CFS anywhere in the world, and will hopefully encourage other countries to follow suit.
Greater Boston area event October 11
Save the Date! You are invited to a screening of the film "Forgotten Plague" on Tuesday, October 11, at 6 p.m. at St. Elizabeth's Hospital in Brighton/Boston, Rm 5 in the St. Margaret's Center building. The 90-minute film will be followed by questions and discussion. Invite family members and friends. Read a description and review.
We are looking for a few committed volunteers!
Our most requested service is helping patients find knowledgeable health care providers (primarily in Massachusetts, but we are hoping to expand to surrounding NE states). Volunteers may spend up to 1-3 hours per week, working at home from your own computer. Training is provided and a 6-12 month commitment is requested. Requirements: email, internet access, ability to learn to use a simple database. Join a small team providing this valuable service!
Help plan our public events!
Our next large event is Nov. 5 and will take place in Natick, MA. Our speaker is Dr. Anthony Komaroff, who will review and take questions on the very latest research that was presented at the October 2016 conference of the International Association for CFS/ME. This event will be videorecorded and posted on YouTube. Help plan the event (develop publicity, help with registration and meeting logistics, plan and help with refreshments). Volunteers will work with others to plan, and ideally should be able to attend the event in person. Short term commitment.
Volunteers can also plan smaller events/gatherings in their local area (doesn't have to be in Massaschusetts). A simple and effective program is a screening of the film "Forgotten Plague" for a small group in your home or a local public space such as a library or community room. We will provide guidance and all materials. Short term commitment.
Join our Events Committee and help make these things happen! One-year commitment.
One or two writers/editors to help with our monthly e-newsletter (help make it be monthly!), working with one of our Board members. Requirements: reasonable knowledge of ME/CFS, ability to select and write relevant and interesting content, sometimes around a theme you select. We provide items you can consider, or you may find your own. Our newsletter goes around the world! Longer-term commitment for someone who has a serious interest in communications and dedication to helping the cause for patients with ME.
If you are interested in volunteering, please email Info "at" Masscfids.org to let us know.