Activate Now
ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

How One LLND Treats Lyme disease and Co-infections Using Natural Medicine

SURVEY RESULTS: Has Your Illness Affected What You Eat?

New depression diagnosis and treatment

Surprising Benefits of Cinnamon

Specific vitamin D levels linked to heart problems

A Sleep Intervention For Children With Autism: A Pilot Study

Higher vitamin D levels may be protective against acute rhinosinusitis

Real Life as a Mom with Chronic Illness

Saffron reduces oxidative stress in metabolic syndrome patients

Print Page
Email Article

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

  [ 7 votes ]   [ Discuss This Article ]
By Leigh Reynolds • • June 8, 2013

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.

Post a Comment

Featured Products From the ProHealth Store
Vitamin D3 Extreme™ Optimized Curcumin Longvida® Ultra ATP+, Double Strength

Looking for Vitamins, Herbs and Supplements?
Search the ProHealth Store for Hundreds of Natural Health Products

Article Comments

Be the first to comment on this article!

Post a Comment

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

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

Featured Products

Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health

Natural Remedies

Vitamin E: Super Antioxidant We Only Thought We Knew Vitamin E: Super Antioxidant We Only Thought We Knew
SAD? Coping with Seasonal Affective Disorder
When a Good Night's Sleep Is Just a Daydream... When a Good Night's Sleep Is Just a Daydream...
"It's Not Easy Being Green" - But It Is Healthy
Ubiquinol - A More Advanced Form of the Energy Producing Nutrient CoQ-10 Ubiquinol - A More Advanced Form of the Energy Producing Nutrient CoQ-10

What is Fibromyalgia?
Fibromyalgia Diagnosis
Fibromyalgia Symptoms
Fibromyalgia Causes
Fibromyalgia Treatments
Fibromyalgia Diet
Fibromyalgia Medications
M.E. & CFS
What is M.E./CFS?
M.E./CFS Diagnosis
M.E./CFS Symptoms
M.E./CFS Causes
M.E./CFS Treatments
M.E./CFS Diet
M.E./CFS Medications
What is Lyme Disease?
Lyme Disease Diagnosis
Lyme Disease Symptoms
Lyme Disease Causes
Lyme Disease Treatments
Lyme Disease Diet
Lyme Disease Medications
M.E. & CFS
Lyme Disease
General Health
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing