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Chronic Fatigue Syndrome Support Group

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We Support Carers Friends And Family Too

Researchers find similarities between long COVID and chronic fatigue syndrome

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.

How Is Chronic Fatigue Syndrome Treated

There’s 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. It’s common for kids and teens with CFS to miss school, have poor grades, or withdraw from friends and social situations.

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 person’s 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!

Read Also: How To Deal With Fibromyalgia Fatigue

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 don’t necessarily look ill and therefore may be vulnerable to the strains and stresses of being disbelieved.

Origin And Evolution Of Pem

Chronic Fatigue Syndrome movie to inspire and empower ...

One reason for this lack of certitude may be traced back to how ME/CFS is defined. The most commonly used ME/CFS definition for research and clinical care is the Fukuda chronic fatigue syndrome criteria , created by the United States Centers for Disease Control and Prevention in 1994. To be diagnosed, patients must not only suffer from unrelenting or recurrent, function-limiting fatigue unresponsive to rest for 6 months, they must also have experienced at least four out of the following eight symptoms concurrently: unrefreshing sleep, tender cervical/ axillary lymph nodes, muscle pain, multi-joint pain without signs of inflammation, sore throat, impaired memory or concentration, new or changed headaches, and post-exertional malaise . Many of these same symptoms occur in healthy people transiently and in multiple medical conditions . Consequently, many clinicians, concerned about missing an alternative diagnosis, are reluctant to diagnose someone with ME/CFS.

Also Check: All Over Body Aches And Fatigue

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

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 –

Why A Support Group

Few people understand what it’s like to have chronic pain or to be exhausted all the time. If they haven’t experienced it themselves, it’s hard for them to truly understand the frustration you face on those days when you just can’t think straight and it’s difficult to hold a simple conversation.

And let’s face it: most people don’t 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 you’re 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 they’re not alone.Many of us also find it easier to talk openly about what we’re 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 you’re not alone and someone else out there really gets what you’re saying. Also, because of their nature, FMS and ME/CFS are conditions you have to learn to manage. People who’ve “been there, done that” can often be the best ones to help you find what helps you most.

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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 don’t have Microsoft Powerpoint, you can follow instructions on the Microsoft website.

Citizens Advice Bureau – Worcestershire CAB Advice Line: 08444 111 303

The Nes Health Total Wellnes System

What Is Chronic Fatigue Syndrome (CFS) and What Causes It?

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

Read Also: Can Sinus Infection Cause Extreme Fatigue

Fibromyalgia Chronic Pain/fatigue Meetup Support Group

The East Portland Fibromyalgia, Chronic Pain/Fatigue Support Group is a safe place for all of us that suffer from chronic conditions, and for the people that support us. Anyone feeling the pain, isolation, and frustration that comes with ailing health is welcome to attend and to share, and most importantly: to be heard. We are a volunteer-only, peer-led group we strive to create a positive, nurturing atmosphere where each can share ideas, resources, and emotions. We share humor and sadness, triumphs and heartbreaks, allowing all to show up as their authentic selves.Our members have a wide range of conditions: fibromyalgia, chronic fatigue syndrome , irritable bowel syndrome, multiple sclerosis, insomnia, Ehlers-Danlos syndrome, depression, anxiety–the list could go on and on. If you’re dealing with pain, fatigue, disability, and illness, you’ve found a group of people that know what it’s like. No one will be shown the door because they’re not “sick enough” or have the “wrong” condition.

TimeZone:

Movement Mindfulness And Relaxation

From Solent NHS Trust youtube page
Free-to-download mindfulness meditation exercises

An exercise to help you to detach from your thoughts and feelings through taking a step back and observing them, rather than experiencing or being them.

Patient Advice and Liaison Service

Please visit our services page for specific services and contact details. Alternatively, contact our Patient Advice and Liaison Service by emailing or calling the number below. You can also give us feedback, make a complaint or share a compliment.

0800 013 2319

*Lines are open Monday to Friday 8.30am to 5pm

The Freedom of Information Act was passed on 30 November 2000. It gives a general right of access to all types of recorded information held by public authorities, with full access granted in January 2005.

The Act sets out exemptions to that right and places certain obligations on public authorities.

Email:

Phone: 0300 123 3919

*Subject to any exemptions which apply, we are obliged to provide the information requested please note that requests for Personal Information is not covered under this Act and should be applied for through the Data Protection Act 1998.

Our administrative and managerial centre is based in Southampton.

While our services can be found around various NHS locations in Southampton and Portsmouth , our administrative and managerial centre is based in Southampton at:

Highpoint VenueSouthamptonSO19 8BR

Central office phone: 0300 123 3390

0300 123 4156 or 02381 031076

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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

Creating Your Own Cfs Support Group

Fight Chronic Fatigue with Functional Medicine in ...

By | Submitted On May 27, 2007

Chronic fatigue syndrome is a condition that can be difficult to manage. It can be even more challenging to find the support you need because many people simply do not understand chronic fatigue syndrome. For this reason, many people with chronic fatigue syndrome seek out a support group. However, what if there is not support group in your area? What can you do?

A great way to start is to check out our local chat forms. There may be a chat group for your area devoted to chronic fatigue syndrome. If not, start one. This will provide you with a quick and effective means to communicate with people in your area who have the same condition.

The more people you meet, the more information you will have that will help you organize your support group. Perhaps the great majority of people you meet live in a certain area. This will help you find possible locations for your group. You can also ask people about their schedules, and this will help you determine a few possible meeting times. Be advised that it may be impossible to find a location and meeting time to accommodate everyone’s schedules. You can’t please everyone.

For your first several meetings, it is best to meet in a public space. People tend to feel very uncomfortable about going to the homes of people that they do not know. Once your group is more established, you may decide to move the support group to someone’s home.

Read Also: Extreme Fatigue And Blurry Vision

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 you’re 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 you’re not, it’s 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.

Swindon Testing For Fibromyalgia

This is neither a group or a treatment, but may also be of interest!

Mapping is a test for Fibromyalgia. It is often relevant to those with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. I myself was mapped as having Fibromyalgia.

Using the website link on that page, I checked to see if there is a mapper in Swindon. According to this website, the nearest one is in the Frome area.

Chrissie Burdett on 01373823024.

Also Check: What Can Cause Extreme Fatigue And Muscle Weakness

Are You Affected By Chronic Fatigue Syndrome

If youre affected by 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.

How Can I Find A Group

The REAL Symptoms of Fibromyalgia / Chronic Fatigue Syndrome!

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 don’t 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 there’s 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 you’re Googled by a current or prospective employer, as part of a legal case, or if you’re applying for disability.

To find a group in your area, there’s 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 can’t find a local group, you might consider starting one.

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