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.
Support Groups For Fibromyalgia And Me/cfs
Fibromyalgia and chronic fatigue syndrome can be lonely conditions. You might find it hard to remain part of social activities, and the people around you may not understand what youre going through. Many of us have to leave our jobs, which further isolates us and can add financial strain to our lives.
Many people with FMS or ME/CFS also are clinically depressed, but even if youre not, its common to go through rocky emotional times. Whether you have the most supportive friends and family imaginable or you feel like no one supports you, you may benefit from a support group.
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.
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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.
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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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.
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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Finding Support Groups And Doctors
Looking for a ME/CFS or fibromyalgia support group or a doctor who treats people with ME/CFS and FM? Here are some ideas to aid your search.
Support groups can be a crucial coping resource when you have a serious illness. Contact with fellow patients counteracts isolation and provides an experience of being acknowledged and supported. Such contact can be a way to feel understood, comforted and inspired. Also, groups can provide information, such as names of local doctors who treat ME/CFS and fibromyalgia. Groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from serious illness. And, finally, they can offer models of successful coping, thus dispelling fear. Similar experiences are available now on the Internet, at online chat rooms and message boards.
A good group is one in which you feel a sense of belonging, which gives you something positive to take home, either inspiration or practical tips, and which offers models of living successfully with illness.
We are not aware of any current lists of ME/CFS or FM support groups in the United States, but the ME Association has an extensive listing of local support groups in the UK.
Finding a ME/CFS or FM Doctor
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.
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Anzmes Is A Proud Member Of:
ANZMES does not recommend any treatments and it is stressed that the diagnosis of ME/CFS relies on clinical description/presentation and on exclusionary medical testing. It is imperative to seek qualified medical advice for evaluation. Any advice, either explicit or implied, is not intended to replace qualified medical advice. ANZMES does not accept any responsibility for any treatment undertaken by readers of this website or for any error or omission in connection with information shared here.
Nhs Funded Swindon Cfs Group
The Swindon & Wiltshire Adult Chronic Fatigue Syndrome Service is based at the Eldene Health Centre.
Group meetings help you to learn skills of pacing yourself.
The advice is the standard advice for CFS to find a sustainable baseline of activity and then only work up from there with increases of 1% in activity or exercise.
Referral to a clinical psychologist is possible for individualsessions to help to learn to manage fatigue. I believe individual sessions with a physiotherapist might also be possible, but please check.
You will need referral from your Doctor. Do take in detailsof the clinic with you as your Doctor may not have heard of the CFS/ME service. Mine hadnt.
Adult CFS/M.E Service at Eldene Health CentrePhone: 01793 695151
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What Are The Symptoms Of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Symptoms of ME /CFS can include:
- Debilitating fatigue
- Post-exertional malaise a reduction in function and substantial worsening of symptoms following physical or mental exertion or exercise.
- Unrefreshing /disturbed sleep
- Feeling dizzy, nauseous or fainting upon standing or sitting up.
- Loss of thermostatic control and heightened sensitivities
The symptoms of ME /CFS are similar to many other conditions. Therefore, it is important to consult your GP for a diagnosis.
Fibromyalgia Me/cfs And Related Conditions Support Group
Fibromyalgia, ME/CFS and Related Conditions Support Group is led by volunteers who have Fibromyalgia and/or ME/CFS. This group provides free support and resources for anyone concerned with FM, ME/CFS, EDS, IBS, Lyme, POTS, TMJ, and others. The group meets twice a month virtually. Please join their group. Email:
———————————–As always, you are welcome to join us at any time during meetings. You’re only late if everyone has left! Likewise, honor your energy levels, and feel free to leave the zoom meeting whenever necessary.———————————-FM, ME/CFS & related conditions support groupONLINE meetingsMeeting ID: 157 476 440***Click this link to join via computer/tablet/iPad: ***No Zoom? You can call in by dialing +1 646 558 8656and enter meeting ID:157 476 440***For people who will be calling in without video, please email your 10-digit phone number and let us know at least 2 days before the meeting date that you are planning to join. No worries if you don’t make it, no cancellation notice is needed. Email: .
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We Support People With Me/cfs & Long Covid
The ME Associationis a national charity that supports thousands ofpeople with ME/CFS each year in the UK.
It is estimated that between 130,000 and 260,000 adults and children are struggling to live with this life changing condition.
ME/CFS is arecognised neurological disease affecting people from all socio-economic and ethnic backgrounds.
It can lead to long-term disability and a lower quality of life than multiple sclerosis or cancer.
At least 25% of the people affected will be housebound or bedbound at any one time. Those with the most severe form of the disease will need 24-hour care.
For many, ME/CFS is a complex post-viral fatigue syndrome that impacts a persons ability to function and is often triggered by an acute infection.
ME/CFS is known by several names e.g. Myalgic Encephalopathy the name we prefer Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome.
Wecampaign to raise awareness of the inequalities affecting this large patientcommunity and we aim to achieve respect and fair treatment for all.
Wefundand supportvital biomedical researchandoffer education and trainingfor healthcare professionals who want to learn more about this often-misunderstood medical condition.
Were here for you!
Contents For Swindon Cfs / Myalgic Encephalomyelitis
Swindon CFS groups or CFS related: please scroll down
- Swindon ME Group for people in Swindon with Myalgic Encephalomyelitis
- Swindon Foggy Friends for various invisible illnesses including Chronic Fatigue Syndrome
- NHS Funded Swindon CFS Group for those in Swindon with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.
- Swindon LIFT groups for a variety of conditions, including CFS and ME
- Wiltshire Testing for Fibromyalgia
Summary List of Swindon Treatments for Chronic Fatigue Syndrome or scroll down
- The NES Health Total WellNES System
- Hydrotherapy pool
· Seasonal Affective Disorder
· Trigeminal Neuralgia
I suspect you would also be welcome if you live in Swindon and have a diagnosis of Dystonia or FNS. Please ask.
A support group can encourage over identification with the label of a particular condition. I find it rather heartening to have a group that allows those with different health labels to meet up.
The above chronic illnesses share the common factor that those with the condition dont necessarily look ill and therefore may be vulnerable to the strains and stresses of being disbelieved.
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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 –
Nhs Services In Dorset
Dorset is one of the few counties in the country to have dedicated NHS CFS/ME services for both adults and young people. Both adult and childrens Services can provide courses of treatment to stabilise the symptoms and aid recovery. Monthly clinics for adults are held in Wareham Community Hospital with a consultant and specialist doctor.
The Dorset NHS CFS/ME Service for Children and Young People runs in 2 centres at Dorset County Hospital and Poole Hospital. References are normally made via GPs for both adults and children.
This Group has formed a valuable and robust working partnership with the NHS CFS/ME Services. For more information on these clinics, and about this Groups support and interaction with both Services, .
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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.
Chronic Fatigue Syndrome Support Group
Related terms: CFS, Immune Dysfunction Syndrome, Post-Viral Fatigue Syndrome, Benign Myalgic Encephalomyelitis, Myalgic Encephalomyelitis, ME, Chronic Fatigue Syndrome, CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome, Chronic Fatigue, Systemic Exertion Intolerance Disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS
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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.