WellME - Wellington Region ME/CFS Support Group

WellME is:

• a non-profit charity where donations are tax deductible;

• a community based organisation;

• the only organisation in the Wellington and Horowhenua Region that offers this service to people with ME/CFS, Fibromyalgia and related conditions; and

• run by volunteers.

WellME is a non-profit organisation formed to provide information, support, education and advocacy for people living with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and related conditions and their support networks in the Greater Wellington Region, including North to Whanganui and the Wairarapa.

ME/CFS, Fibromyalgia and related conditions is not chronic tiredness that we all feel from time to time. It is an auto-immune/neuro-inflammatory disease that affects the brain, central nervous, neuro-endocrine, autonomic and immune systems – leaving suffers feeling very unwell, profoundly exhausted, cognitively impaired and in pain. Fibromyagia or Central Sensitisation Syndrome encompasses many types of pain, but also includes muscle weakness.

ME/CFS and other related conditions that we support leave their sufferers socially isolated, marginalised and frequently housebound (often bed bound) by fatigue, cognitive dysfunction and poverty.

The Institute of Medicine Report 2015 noted people with “ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, cognitive heart failure, hypertension, depression, multiple sclerosis and end-stage renal disease”.

The invisible nature of ME/CFS and other related conditions mean that there is little awareness in the community about the physical, social, emotional and financial impact on sufferers and their families/caregivers.

WellMe provides safe, facilitated meetings and coffee groups in the community where suffers find understanding, companionship, sharing and hope in a welcoming and positive environment. Professionals with specialist skills run these. At these sessions the latest research and local information is shared. WellMe also provides a specialist library and a 0800 phone support. Additionally WellME holds special meetings where specialist ME/CFS and other related conditions speakers share their work.

The Wellington ME/CFS Support Group started in 1995 and has been an incorporated society since 2009. We are the only organisation in the Wellington Region that offers this service to people with ME/CFS.

WellME has an annual operating budget of approximately $36,000. We would like to raise at least $1,500 per month via donations. As an organisation we are continually applying for grants and looking at all fundraising opportunities.

WellME has very small overheads as we have no offices, all coordinators work from home. The majority of our expenditure is on supporting our support coordinators who run our support group meetings and our 0800 number giving regular support to sufferers. After paying coordinators our next significant expenses are phone and transportation costs as we cover such a significant area along with general administration costs.

WellME is run by a volunteer Executive Committee as well as having a few key volunteer positions including newsletter editor and social media strategist and other volunteers.

Some facts about ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome):

• It is estimated that there are about 2200 people in the greater Wellington Region who have ME/CFS.

• 400 people in the Wellington Region are severely affected by ME/CFS

• ME/CFS is three times more common in women than in men

• The most common age for it to develop is in your early twenties to mid-forties

• Most people with ME/CFS have a fluctuating course with the disease.

• Sufferers rarely have their previous levels of health and functioning return.

• There are three levels of ME/CFS

o Mild

o Moderate

o Severe