- Last Updated: 08 December 2015 08 December 2015
Cold weather is here - we have seen our first snowflakes already! We hope you are warm and cozy and looking forward to the holidays.
Nov 15 Preview screening of Ryan Prior's new film, "Forgotten Plague: ME and the Future of Medicine"
You are invited to a special preview screening of Ryan Prior's new film, "Forgotten Plague: ME and the Future of Medicine," a film that tells what journalist Llewellyn King has called "the great unreported medical story of our time." Q&A with the filmmakers will follow the showing. Learn more about the film.
Date: Saturday, Nov. 15, 2014, 1-3:30 p.m. (Sign in begins at 12:30)
Place: Morse Institute Library, 14 E. Central St, Natick MA 01760
Parking: Free 2–hour parking is available in the lot on Clarendon Street behind the police parking lot. Metered parking is available on the street and in the East Central Street lot next to Town Hall.
We will have a full house (max. 125 people), so register as soon as you can. This program is especially appropriate for family members and friends. Members get in free! A donation of $15, or whatever you can afford, is requested from non-members and guests.
This special program will be available live, in person only.
Update your membership before Nov 15
If you can, join or renew your membership online prior to the Nov. 15 meeting. This will speed up registration at the event for all of us. If your membership is current, your renewal will extend your membership by one year from your current expiration date. If your membership has already expired, the new membership will begin the day it is received. If you don’t want to use a credit card, you can still renew online but choose “Pay Later” and bring your check to the event.
Important update on Disability issues
The Massachusetts CFIDS/ME & FM Association Disability Committee recently met with Mala Rafik and Kate Sullivan, two very knowledgeable disability attorneys at the firm of Rosenfeld, Rafik, and Sullivan in Boston. Both attorneys are familiar with the current issues and problems patients encounter as they go through the disability claims processes.
This report outlines some of these problems – as well as how patients, their doctors, and their attorneys can properly respond to them.
Tips for better living with chronic illness
#3) Plan ahead for holiday travel
With holiday travel looming, this may be a good time to start planning. Check out some ideas and recommendations here.
Research on ME/CFS
Griffith researcher awarded $1.85m grant to accelerate diagnosis, treatment for CFS
“Providing increased services for Chronic Fatigue Syndrome sufferers will be the focus of Griffith research following the award of a $1.85m grant to one of Australia’s foremost authorities on the condition...Knowledge generated by these studies will be of great assistance in the management of patients with CFS and will also help CFS patients understand the biological basis of their disease," says Pro Vice Chancellor (Health) Professor Allan Cripps, a co-investigator on the research team.
Exciting research and multidisciplinary CFS treatments are taking place at Stanford University, led by Dr. Jose Montoya and others. Be sure to watch the video of Dr. Montoya and his patients.
Read the full article.
An imaging study by Stanford University School of Medicine investigators has found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people.
“The take-home is simple: It’s time to give up the idea that CFS is a psychosomatic disease.”
An article in APA Monitor seeks to dispel myths about CFS, and reaches 130,000 professionals in the field of psychology.
Research on Fibromyalgia
Pain and Opioids–P2P Workshop and Report
An unbiased, independent panel developed a draft report of the 2014 NIH Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain. This report summarizes the workshop and identifies research priorities. Read more.
The workshop, especially on Day 1, had many informative and interesting presentations which pain patients may want to view. A videocast of the entire workshop is available. See the agenda for approximate times of the individual sessions.
National Pain Report–Marijuana rated most effective for treating fibromyalgia
“Medical marijuana is far more effective at treating symptoms of fibromyalgia than any of the three prescription drugs approved by the Food and Drug Administration to treat the disorder.” That is one of the surprise findings in an online survey of over 1,300 fibromyalgia patients conducted by the National Pain Foundation and National Pain Report. Learn more.
Pain Physicians and Pharmacists Panned by Patients in Survey
Based on a survey, this article quotes a number of pain patients as they describe how they have been treated by doctors and pharmacies. For example:
- Most patients (71%) had seen four or more physicians to treat their pain and 20% had seen a whopping ten or more doctors.
- “Of all the doctors I’ve seen, only two heard me and understood. The rest assumed I was there for drugs,” wrote one pain patient.
ME/CFS P2P Evidence Review and Workshop
Chronic Fatigue [Syndrome]: NIH Literature Review Faulted–Review in Medscape Medical News
A series of doctors speak to the relevance of existing studies, often concluding that these studies do not address many of the issues around ME/CFS. However they do articulate many issues and articulate the areas in which research is being done. (Note: If you don’t already have a Medscape account, you will need to set one up (free) to read this and other articles. Registering is well worth the effort as this site often has very good information.)
NIH P2P workshop
NIH is sponsoring a workshop called Advancing the Research on ME/CFS. The workshop will be held on Dec. 9-10 in Bethesda, Maryland. Among other topics the workshop will examine:
- Multiple case definitions and how they impact the current literature
- Measurement outcomes (tools and measures) currently used by researchers of ME/CFS
- Research on treatments or therapies shown to be effective in addressing symptoms of ME/CFS
- How an understanding of the pathophysiology of ME/CFS can be applied to the development of effective and safe treatments.
If you are unable to attend in person, you may view the workshop via NIH Videocast.
Read more about the workshop.
Warning! This workshop is going to be controversial (see P2P Agenda: What the Huh?), so if you want to participate in the post-workshop discussions, attend the meeting or watch the videocast and become informed.
How you can help
Can you volunteer a few hours a month? Here are some specific ways you can help our Association!
- Update our database – contact those whose email is bouncing - by postcard or phone. We don't want to lose touch with anyone!
- Medical educator - research medical/health care professional meetings in Massachusetts and find out if we can set up a table to distribute information on ME/CFS to doctors and other health care professionals.
- For someone local to Natick, MA: Assist our clerk - Take notes at Board meetings (need to attend in person). For this important task, we need a clear-headed accurate note-taker who can commit to attending 5 Saturday meetings during the year.
If you can help in any of these ways, please Contact Us. You need basic computer skills and ability to work independently. Your contribution of time and skill will make a difference.
Contribute funds to our Association at no cost to you! A portion of the sales price of most items you buy from Amazon.com will be sent to our Association every quarter. To set this up, click the Amazon Smile graphic on our home page, or click here Amazon Smile. If you need to 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 smile.amazon.com.
If you like receiving this free newsletter every month, please consider supporting our work by becoming a member.
Please pass this newsletter on to family, friends, and fellow patients! If you are receiving this copy from a friend, you can signup to receive the newsletter yourself. If you are signed up to receive our newsletter and you change your email address, please let us know! You can sign up for the newsletter again with your new address, or send us a note about your new email address via Contact Us.
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