ProHealth health Vitamin and Natural Supplement Store and Health
Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help

|
|
|
|
 
Print Page
Email Article

Survey Highlights Serious Unmet Need for Safe & Effective Treatments for Patients with ME/CFS

  [ 7 votes ]   [ Post a Comment ]
By Leigh Reynolds • www.ProHealth.com • June 8, 2013

previous article next article

Reprinted with kind permission from Research 1st, May 29, 2013

Association News, Conference Reports, Policy Matters, Understanding CFS

By Leigh Reynolds

On April 25-26, 2013, the U.S. Food and Drug Administration (FDA) held a workshop on drug development related to ME/CFS. This was the first of 20 disease-specific meetings held by the FDA as part of a mandated “Patient-Focused Drug Development Initiative” where the FDA committed to soliciting patient perspectives to inform benefit-risk assessment for drug development.

The Association wanted to make sure as many patients as possible had an opportunity to provide their perspective and lend their voice to the meeting. Using questions posed by the FDA and other we believed were important to convey the experience of living with ME/CFS, we conducted an online survey asking questions about the impact of ME/CFS on lives, symptoms experienced and treatments used. 

More than 1,400 people responded to this survey.  We reported the results at the FDA meeting to represent the patient voice during the proceedings. The survey results indicate that the majority of people (86%) have been diagnosed with ME/CFS by a healthcare professional.  Only 17.5% of people said ME/CFS was their only condition; most people deal with multiple conditions and diagnoses that require management.  The average age that people indicated their ME/CFS began was 32 years of age.  On average, patients have been sick for 18 years.

“I was moved to tears while reviewing and analyzing the responses about the impact of ME/CFS on individuals, their family and friends,” said Suzanne Vernon, PhD, Association scientific director.  “There was a great deal of expression of loss and sadness from ‘this miserable disease.’  Many described how ME/CFS changed their lives from active, productive citizens to one of isolation and loneliness.”Throughout the responses people expressed uncertainty and fear about their life because of the lack of effective treatments and the increased risk of disease and death.  Many patients can no longer work, many have lost friends and relationships, and many mourned the loss of being active.CFS Word Cloud

When asked what are the most significant symptoms experienced because of ME/CFS, extreme exhaustion, muscle pain, cognitive impairment, and cold intolerance, were consistently named. 

The graph below shows the treatments used by ME/CFS patients.  More than 70% of ME/CFS patients take nutritional supplements and on-drug therapies such as diet modifications, rest, taking naps and activity modification to treat their symptoms.  FDA-approved medicines and over-the-counter products are used by more than 50% of ME/CFS patients.  Slightly more than 40% of patients use a variety of other treatments such as massage therapy, yoga, acupuncture and meditation to treat their ME/CFS.  When asked about the efficacy of these treatments, the range of responses varied from no effect to helping relieve one or a few ME/CFS symptoms.

 

We learned through this survey and at the FDA Drug Development meeting for CFS and ME that individuals experience and describe their ME/CFS in different ways.  Understanding  patients’ perspectives is critically important for drug development and getting safe and effective treatments to patients who need them.  These perspectives give us the information on the symptoms that are most important to treat.  Documenting and analyzing patient perspectives also gives us the most important clues to possible causes of ME/CFS. This makes the more than 750,000 words provided by the more than 1,400 survey respondents absolutely invaluable.  As we dive deeper into these responses it will help inform us of the most important and appropriate things to treat and the most important effect to measure in clinical trials.

It is quite possible that this survey will turn out to be one of the most important patient-centered studies done to date.  We will keep you updated as we dive deeper into your data.


previous article
  Rating 3.4 (7 votes) next article




DISCUSS THIS ARTICLE   (0 existing comments) Post a Comment 




[ Be the first to comment on this article ]




 
Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Our FREE
Newsletter
Subscribe Now!
Receive up-to-date ME/CFS & Fibromyalgia treatment and research news
 Privacy Guaranteed  |  View Archives

Save on Your Next Order

Featured Products
OsteoTec™ UC-II® OsteoTec™ UC-II®
A True Breakthrough in Joint health
FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Vitamin D3 5000 IU Vitamin D3 5000 IU
Give your body a boost with the sunshine vitamin
Natural Resveratrol Natural Resveratrol
Powerful Antioxidant Support + Positive Anti-aging Effects
Omega 3-6-9 Omega 3-6-9
All three EFAs in one convenient form

Most Viewed Articles
What's the Hidden Cause Behind YOUR Fibromyalgia Flares? [more]

Pridgen Reports Fibromyalgia Antiviral Trial Results “Very Positive”: Predicts New Approach Will Be ... [more]

VIDEO: IACFS/ME Conference - Summary of Research by Dr. Komaroff [more]

How to Limit or Minimize Your Fibromyalgia Flare [more]

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME [more]

The Devil Is In The Details – A Herpes Simplex Virus Inquiry For Fibromyalgia and Chronic Fatigue Sy... [more]

Sympathetic Nervous System Dysfunction in FIbromyalgia and Overlapping Conditions [more]

Review of Nutritional Supplements Used for ME/CFS and FM [more]

FREE: Stop Feeding Yourself PAIN Guide [more]

Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel sy... [more]


FIBROMYALGIA RESOURCES
What is Fibromyalgia?
Fibromyalgia 101
Fibromyalgia Symptoms
Fibromyalgia Treatments
| CFS RESOURCES
What is CFS?
ME/CFS 101
ME/CFS Symptoms
ME/CFS Treatments
| FORUMS
Fibromyalgia
ME/CFS
ADVANCED MEDICAL LABS
WHOLESALE  |  AFFILIATES
GUARANTEE
CONTACT US
PRIVACY
RSS
SITE MAP
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing