Frequently Asked Questions

Frequently Asked Questions

  1. What is ME/CFS?
  2. Do I have ME/CFS?
  3. What if nobody believes me?
  4. What are the treatments for ME/CFS?
  5. How do I decide which treatments are best for me?
  6. What about alternative treatments?
  7. Are there support services that I can access to help with my condition?
  8. How do I find a health practitioner in my area?
  9. Where can I access local support groups?
  10. How can I work with my community and workplace to promote awareness of ME/CFS?
  11. Where can I join the Emerge Australia community (memberships)?
  12. Can I make a donation to Emerge Australia?
  13. Who can I contact for immediate assistance?
  14. Where can I go to learn more about the experience of others diagnosed with ME/CFS?
  15. Related Links

 

1. What is ME/CFS?

Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a complex neuro-immune condition with symptoms related to the dysfunction of multiple systems in the body. These symptoms can affect the brain, gastro-intestinal system, immune system, endocrine system, and the cardiac system.

More information regarding symptoms, diagnosis and research.

 

2. Do I have ME/CFS?

 If you believe you may have ME/CFS, diagnosis can be essential to obtaining financial support, navigating the illness with your workplace, family, and friends, as well as for peace of mind. The condition can present in many different ways, and a clinical diagnosis will need to meet certain criteria.

A number of other illnesses share similar symptoms with ME/CFS, implying that a diagnosis will depend on a careful assessment of symptoms – which can occur over the course of several consultations with your health care professional. Diagnosis of ME/CFS also requires ruling out a number of other illnesses first.

Severity of primary symptoms.

A common reference for understanding ME/CFS.

Understanding the complexity of diagnosis for ME/CFS.

 

3. What if nobody believes me?

It is possible that you will not be believed by family and friends, even by your GP. Many doctors were not taught about ME/CFS at medical school or are reluctant to make a diagnosis because there is a belief that this will not help patients.

Chronic Fatigue Syndrome has been wrongly implicated as a psychological disorder that has little to do with biology. There is therefore a level of implied laziness or falseness to the condition. Other patients can be diagnosed with depression-like symptoms, or told to exercise back to health. This is of course untrue, and can hinder early diagnosis and treatment, as well as exacerbate symptoms. The title Chronic Fatigue Syndrome can be unhelpful to some as it has been used to represent a number of symptoms that can range from completely bedridden to few or no physical symptoms.

Many patients will receive a diagnosis for other illnesses before ME/CFS, which can involve seeing many practitioners and specialists until an appropriate diagnosis is made.

You can read more about the barriers to obtaining a diagnosis.

Untangling a confusing diagnosis may be better explained by the International Consensus Primer (ICP) 2012.

 

4. What are the treatments for ME/CFS?

Daily management of symptoms is an important part of maintaining a quality filled life. Pacing is considered an important aspect to symptom management, which includes working within an energy envelope, and understanding personal triggers to symptom onset.

There are also a wide range of other treatments sufferers have found to be useful, working out what works best for you is important, not everybody will experience similar results from the same treatments.

Treatment for other symptoms such as sleep disturbance, food intolerances, postural orthostatic intolerance and multiple chemical sensitivities.

 

5. How do I decide which treatments are best for me?

As mentioned, there are many treatments on offer for ME/CFS and related illnesses. Some treatment more reputable and rigorously tested than others. Deciding which treatments work best for you is ultimately your choice but navigating through the array of information on offer can be daunting. Consulting with your doctor may be an important step towards appropriate treatment.

Discussing your treatment options with family, friends, a social worker or spiritual advisor may also be a helpful option for some.

Information about working with your healthcare team.

Please note that many sufferers undergo multiple treatments – some complementary, some alternative. Trying-out multiple treatments for your condition is not uncommon.

 

6. What about alternative treatments?

Many people with ME/CFS seek out alternative therapists (e.g. naturopath) as a complementary aspect to their treatment.

However you should carefully examine treatments, when deciding if they are something you wish to try. You may want to consider the following questions:

  • Is the treatment based on an unproven theory?
  • Is the treatment rejected by the scientific community as a placebo, dangerous, or unnecessary?
  • Does the treatment promise a cure for all autoimmune illnesses?
  • Are you told not to use conventional medical treatment?
  • Is the treatment or drug a “secret” that only certain providers can give?
  • Does the treatment require you to travel to another country?
  • Do the promoters attack the medical/scientific establishment?

Discussing treatments with your health professionals may help you answer some of these questions

 

7. Are there support services that I can access to help with my condition?

Emerge has a guide of support services for people with ME/CFS and associated conditions and their families, carers and friends, as well as community workers and health professionals working with people with ME/CFS. The guide has been produced by volunteers and staff at Emerge Australia.

Infoexchange has Australia’s most extensive directory of community support services for health, welfare and community services.
Healthshare is Australia’s leading digital health platform, empowering Australians to make better health choices. You can connect with local, credible and relevant health practitioners, products and health information.

 

 8. How do I find a health practitioner in my area?

To find a health practitioner in your area visit the Health Rising Forum. This forum is free to join. Although based in the USA, the forum has an area specifically for discussion of doctors in Australia.

 

9. Where can I access local support groups?

When you have a condition like ME/CFS, it’s very easy to become isolated either emotionally or physically.  Having the support of people who understand, and who can unconditionally provide a listening ear, practical advice or comfort is extremely important.

Emerge Australia coordinates a number of peer support groups across Australia and if there’s not one in your area, they’re able to provide you with the tools to set up your own group.  There is also a group being developed for people who are housebound or bedbound. To access a local support group please email peersupport@emerge.org.au

If you care for someone who has a chronic illness of any sort, then making sure you receive support is extremely important.

 

10. How can I work with my community and workplace to promote awareness of ME/CFS

There’s plenty that you can do to raise awareness of ME/CFS, whether that be something as simple as a tweet or something a little more involved, like participating in the Do Something for ME program recently launched by Emerge Australia. We believe that until a cure is found, people affected by ME/CFS can lead better lives by being understood and supported by the medical profession and their general communities. There are lots of different ways that you can help your local community to be more aware of ME/CFS.

 

11. Where can I join the Emerge Australia community (memberships)

Our members are what gives Emerge Australia the impetus, direction and drive to continue its work. By joining & staying with the Society, you will also be helping advance the cause for others with ME/CFS and related neuroimmune conditions.

Becoming a member is easy! You can become a member or renew your membership online, or by downloading a membership form online to print, complete and send to our office. If for any reason you are unable to do this, please contact us and we will be pleased to post or email you a copy.

When we have received your completed Membership Form and subscription, we will send you a welcome pack that includes a number of resources about ME/CFS and related conditions.

Full Membership is available to all adults with ME/CFS, carers and anyone with an interest.

  • $40.00 (incl GST) General membership – with electronic (PDF) version of Emerge Journal
  • $15.00 (incl GST) Concession – with electronic (PDF) version of Emerge Journal
  • $50.00 (incl GST) General membership – with PRINT version of Emerge Journal
  • $25.00 (incl GST) Concession – with PRINT version of Emerge Journal

Each fully paid up member is entitled to vote at our Annual and Special General Meetings.

 

12. Can I make a donation to Emerge Australia?

To make a donation with our secure online donation website.

To make a gift by credit card over the phone, please contact us

 

13. Who can I contact for immediate assistance?

Individuals who require immediate support and assistance should call Lifeline on 13 11 14, emergency services on 000, or their local hospital emergency department.

Lifeline  13 11 14

Beyond Blue  1300 22 4636

Suicide Line  1300 651 251

 

14. Where can I go to learn more about the experience of others diagnosed with ME/CFS?

Story telling is a powerful way for people with chronic health issues to validate their experiences, have their voices heard, and to provide support and comfort to others with similar issues.

We are really pleased to be working with My Invisible Life to help bring the stories of people affected by ME/CFS and related conditions to a wider audience.

In the meantime, you can read the personal stories on our site of some of our members who have asked us to share their stories about the effect of ME/CFS and related conditions.

If you have a personal story that you’d like to share just with us, then please contact us, or if you’d like to be part of My Invisible Life, then register right here.

 

15. Related Links

http://emerge.org.au/

http://www.cortjohnson.org/

http://www.serviceseeker.com.au/

https://www.healthshare.com.au/