New Saturday Jan 28th At : 30 Am Et
These drop-in Zoom Support Groups are interactive and provide a safe space for patients to share stories and experiences, ask questions, and offer one another support.
The groups are run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.
Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.
What age is considered Young Adult?Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.
This groups are free for members. You are welcome to register for one or both sessions. There is a $10 suggested donation for those that can afford to contribute. A contibution of $25 or more will include annual membership.
Recent Conversations In The Myalgic Encephalomyelitis Forum
- celiac diseaseA digestive disease that is caused by an immune response to a protein called gluten, which is found in wheat, rye, barley, and oats. Celiac disease damages the lining of the small intestine and interferes with the absorption of nutrients from food.
- A chronic condition characterized by minimal or absent production of insulin by the pancreas.
Why A Support Group
Few people understand what its like to have chronic pain or to be exhausted all the time. If they havent experienced it themselves, its hard for them to truly understand the frustration you face on those days when you just cant think straight and its difficult to hold a simple conversation.
And lets face it: most people dont want to hear about how horrible we feel all the time. Even if they want to be supportive, healthy people are often uncomfortable talking about illness.
When youre around other sick people, though, the social pressure to not talk about illness is gone. When people with these conditions come across someone else with similar symptoms for the first time, it can be an immense relief to know that theyre not alone.Many of us also find it easier to talk openly about what were going through with people who have experienced it.
Emotional ups and downs are common for those of us dealing with a chronic and potentially debilitating illness. Sometimes it helps to know youre not alone and someone else out there really gets what youre saying. Also, because of their nature, FMS and ME/CFS are conditions you have to learn to manage. People whove been there, done that can often be the best ones to help you find what helps you most.
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Chronic Fatigue Syndrome Support Groups
The following is a list of Chronic Fatigue Syndrome support groups:
Solve ME/CFS Intiative –
The Solve ME/CFS Initiative has been the leading organization focused on myalgic encephalomyelitis and Chronic Fatigue Syndrome since being founded in 1987. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding towards a cure.
National CFIDS Foundation –
The Foundation’s objective is to fund research to find a cause, expedite treatments and eventually a cure, as well as providing information, education, and support to people who have CFIDS , myalgic encephalomyelitis and many other names).
PANDORA is a grassroots advocacy organization that promotes awareness of ME/CFS, Fibromyalgia, Gulf War illnesses , multiple chemical sensitivities and chronic Lyme disease. PANDORA cooperates with other patient organizations to advocate for physician education,increased government-funded research and government policies that make advancement in improving patients’ quality of life.
The Institute for Neuro Immune Medicine at Nova Southeastern University –
Patient Information And Mangement Resources For Cfs And Me
We have compiled a few short presentations to share some basic information about CFS/ME and some initial management strategies that you and your family/ friends might find helpful. Following assessment, your therapist may ask you to watch a specific presentation that is most relevant to you. This can then be discussed further in following appointments.
Please click on the file link to download the presentation. Once in presentation, view the slides in slideshow mode to hear the voice over. If you dont have Microsoft Powerpoint, you can follow instructions on the Microsoft website.
DIAL North Worcestershire: 0800 970 7202
Citizens Advice Bureau Worcestershire CAB Advice Line: 08444 111 303
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Bergen County Me/cfs/fm Support Group
Due to the Pandemic, there are currently, no in-person meetings. Scroll to announcement below the following information for info regarding virtual meetings.
THESUNDAY ZOOM MEETINGS ARE PERMANENTLY MOVING TO THEFOURTHSUNDAY OF THE MONTH, effective MAY 2022.
Hackensack University Medical Center North on Old Hook Road, Westwood, NJ FOURTH Sunday of the month 2-4 PM. Please check Bergen group website for each meeting dates and cancellations. Easy parking close to the front door No stairs to climb Free parking. Meeting Room main level immediately to the right of the door. Directions on the HUMC North website http://www.hackensackumc.org/pascackvalley. Look for the Pascack Valley location on Old Hook Road NOT the Hackensack location.
Bergen group website: . Sign up to receive online newsletter, meeting reminders and occasional articles of interest. All mailings sent blind copy. .asp
ANNOUNCEMENT: The Bergen Support Group is inviting you to a scheduled Zoom meeting: Join Zoom Meeting at:
What Makes Our Treatment Process Different
Most doctors, especially those who specialize in a certain area of the body, focus on treating your symptoms. As a result of this approach, you are never actually cured. In many cases, you must rely on medication or treatments for the rest of your life because you are merely treating the symptoms of your condition.
We focus on treating the underlying cause of your condition which means we are able to get to the root of the problem and give you a treatment plan focused on curing you of chronic fatigue.
Chronic fatigue occurs in varying degrees of severity and people who suffer from this often have a combination of several different underlying problems that cause this condition.
Usually, there are about five to six factors and it is important to treat each of these factors simultaneously. Chronic fatigue is unusual in that each separate underlying problem can trigger other problems. This is why it is essential to determine all the underlying factors and treat all of them simultaneously. It never ceases to amaze us how quickly a case of chronic fatigue can resolve once the underlying problems are treated.
Generally our process can be broken down as follows:
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How Is Chronic Fatigue Syndrome Treated
Theres no known cure for chronic fatigue syndrome. But experts say that these lifestyle changes can help kids and teens who have it:
- Regular planned exercise as part of a daily routine. Exercise can increase energy and make a person feel better. Teens with CFS should pace themselves while doing any physical activity that takes a lot of effort. Several studies show that graded exercise is very helpful in CFS recovery. This means starting with small activities and slowly working up to a higher level of exercise.
- Follow stress-management and stress-reduction techniques. A doctor or therapist can teach teens great ways to take control of some aspects of the illness.
- Ensure good sleep habits and regular bedtime routines to overcome CFS-related sleep problems.
- Find ways to keep track of important things, such as keeping lists and making notes, if there are problems with concentration or memory.
Meeting often with a therapist or counselor can help in CFS treatment. So can getting involved in a support group for people with CFS. The main goals of therapy are:
- to help people cope with the illness
- to change negative or unrealistic thoughts or feelings into positive, realistic ones
Having a positive outlook about getting better is very helpful. Therapy and support groups can also help students with CFS deal with the academic or social challenges. Its common for kids and teens with CFS to miss school, have poor grades, or withdraw from friends and social situations.
How Can I Find A Group
You can find myriad support groups online and, depending on where you live, you may be able to find them in your community as well.
- You dont have to get dressed and leave the house
- You can meet people from all over
However, they also have some drawbacks. Just about any online forum can attract trolls who are just there to be obnoxious. The anonymity of being online can also bring out the worst in some people. Look for chat rooms or pages with active moderators who keep that kind of thing to a minimum.
Before you jump into an online group and start sharing personal information, browse through the threads to see if the tone is generally positive or negative. Pay attention to whether there are a lot of spammy posts and whether theres an administrator who can deal with problems.
Social media pages and groups can be great, as well, especially when it comes to closed or secret groups. Those are harder to find, though.
Keep in mind that anything you post online may come back to haunt you. You might want to consider a second screen name to protect your privacy in case youre Googled by a current or prospective employer, as part of a legal case, or if youre applying for disability.
To find a group in your area, theres always Google. You can also ask your healthcare provider, check with local hospitals, and check with your health insurance company to find out about local resources and programs. If you cant find a local group, you might consider starting one.
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Support & Info Groups
There are a number of excellent support groups for ME/CFS patients, and many also have good information resources about the disease.
One of the very best is, of course, us! Phoenix Rising is run by and for patients, and as well as our information pages , you can find information and support on our very active and friendly forum, which is the largest ME/CFS forum in the world.
Below are listed the main international ME/CFS forums , and the charities and groups who offer information and support.
Research charities are listed on a separate page.
Find A Cfs/fms Support Group
Fill in your search criteria below to search for a support group in your area. Click on the name in the search results for a complete profile of the support group.
|San Diego CFS-FM Education and Support Group
|FMS Support Mercer & W. Monmouth
|The Southern IL Carbondale FMS Support Group
|CFS Support of Greater Harrisburg PA
|Hopekeepers: A Chronic Pain/Illness Support Foundation
|Abington Mem Hosp FMS/CFIDS S.G.
|Susan Sheets or Mary Ann Rockwood
|Family Life -The Chapel Fibromyalgia Support Group
|SF Bay Area FMS & MPS Support Group
|FMS Support Group of Stanly County
|CFIDS New Mexico, Inc. Support Network
|Fibromyalgia Fight Club: Book Club and Support Group
|NW Suburban Fibromyalgia Support Group
|MD Bay Area CFS/Dysautonomia Support Group
|Delaware County CFIDS Support Group
|Athens, GA- CFS/FM Support Group
|Northeast Atlanta CFIDS Support Group
*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.
The information provided on this site is intended for your general knowledge only and is not a substitute for professional medical advice or treatment for specific medical conditions. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition.
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The Nes Health Total Wellnes System
NES was set up in part by a young British man with Chronic Fatigue Syndrome, called Harry Massey.
Harry has a background in physics. He was bedbound with CFS and found his treatment options limited by his lack of mobility I know that one!
Over many years, Harry tried many different approaches to heal himself. Eventually he cooperated with Peter Fraser to develop infoceuticals.
I have listened to a webinar by Harry Massey. The following is my own understanding of infoceuticals so please forgive any errors:
Infoceuticals work on something similar to the homeopathic principle. Instead of effectively giving the body a mini vaccine, they work to remind the body of how to do health.
My understanding is that you liaise with a practitioner to determine the liquid remedies that you need to take. Some improvement can come about quickly, but please know that it took Harry Masseyy 2 years to regain health. He is now back to mountain biking and out there making films and running a business.
We are lucky to have a NES practitioner in the Swindon area, in Chiseldon.
Karyse Day can be contacted on 01793 740522
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American Me And Cfs Society
The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. Seeking to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients. AMMES runs a financial crises fund which provides grants intended to assist patients who find themselves unable to meet a critical need. Apply for a grant
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We Support Carers Friends And Family Too
Are you a carer for or relative of someone with chronic fatigue syndrome? Its just as important for you to look after your own physical and mental wellbeing too.
The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including CFS, from anywhere in the UK.
We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.
Sunday January 22 2023 4 Pm Est
Please join us as journalist and ME patient Ryan Prior reads excerpts from his new book, The Long Haul: Solving the Puzzle of the Pandemics Long Haulers and How They Are Changing Healthcare Forever, released November 2022 by Post Hill Press. He will be joined by marketing specialist and Long COVID advocate Cynthia Adinig, whose experiences obtaining treatment are discussed in the book. Rivka Solomon, long-time ME/LC advocate and MassME member, will host the meeting.
Following the readings, Ryan and Cynthia will respond to questions and comments from the audience. The entire program is expected to last about 75 minutes. A recording of the presentation will be available after the event.
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Why Doctors Have A Hard Time Diagnosing And Treating Cfs
Unlike diseases like cancer where there is a clear cut diagnosis because it is something doctors can see on x-rays and clear indication of treatment as friends and relatives can see the effects of chemotherapy treatment like loss of hair or weight, chronic fatigue syndrome has this invisible presentation where the patient looks normal but yet is so ill they have no energy to function in a normal capacity. In fact, many doctors, friends, and family tell individuals who suffer from CFS that its all in their head. CFS is difficult to diagnosis which is why it is important to seek out a physician who is an expert in diagnosing and treating chronic fatigue.
Are You Affected By Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
If youre affected by ME /CFS, The Brain Charity can support you.
We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.
We provide practical help on all aspects of living with chronic fatigue syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with chronic fatigue syndrome from all over the UK from our centre in Liverpool.
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Shine Protocol For Treating Chronic Fatigue
Our treatment of Chronic Fatigue Syndrome focuses on Sleep, Diet and Nutrition, Hormone imbalance including Thyroid, Infections and Exercise. Our process is also known as the S.H.I.N.E.® Protocol and was developed by Dr. Jacob Teitelbaum who is the national leading expert on treating chronic fatigue syndrome.
Chronic fatigue syndrome reflects an energy crisis in the body that triggers a host of downstream effects such as muscle pain, insomnia, hormonal deficiencies, infections, poor liver detoxification, immune dysfunction, and decreased heart function. With treatment, its critical to go to the heart of the problem and treat your bodys energy furnaces because you cant overcome fatigue if the cells and tissues in your body wont have enough energy.
Restoring optimal energy production and eliminating those things that drain your energy is critical to your recovery. The checklist for doing this and getting well is called S.H.I.N.E.® which stands for:
Unique therapeutic treatments include intravenous vitamin and mineral infusions as well as a combination of immune-enhancing and anti-inflammatory injections to achieve the best results.
Hormonal imbalances are also frequently implicated in the symptoms of Chronic Fatigue Syndrome. It is important to assess the production of DHEA, estrogen, progesterone, and testosterone. Treating hormonal deficiencies is essential in treating Chronic Fatigue Syndrome.