Chronic Fatigue Syndrome (ME/CFS) is described as a complex multi system illness, with no definite cause or cure and often leaving sufferers to manage their own condition. Liz Carmine-Dick runs an ME/CFS support group which is based in Taradale. I caught up with Liz to find out more about this often debilitating condition.
How long has the ME/CFS support group been running?
We have been in operation since 2009, operating on a shoestring and having meetings at people's homes, libraries and everyone working voluntarily. In 2011 we applied and received charitable trust status, which means we can apply for funding sources outside of our organisation and so I am now employed as part-time manager/co-ordinator.
How often do you have meetings?
We have support meetings once a month and are currently meeting in Taradale at the Co-Lab (formerly the old Taradale Borough Council building at the back of the Taradale Town Hall.) Covid-19 brought a temporary halt to our meetings this year so we needed to support our members in other ways. We did this by keeping in touch through video messaging, Facebook, phone calls, email and organising meal deliveries and emergency food parcels for those who couldn't leave their homes. ME/CFS sufferers needed to be particularly vigilant during the Covid outbreak as their immune systems were already compromised.
How many people usually attend meetings?
We have 25 to 30 participants - some attend regularly, some occasionally.
Tell me a bit about what happens during meetings?
We try to encourage people with ME/CFS/fibromyalgia to come along to our meetings if this is going to be practical for them, and if they are well enough to do so. Our support meetings give people the opportunity to be with others who understand what they are going through, and to seek out and learn various ways of managing the many symptoms of their illness. Most of all it is acceptance by others that their illness is real and not imagined as previously, and even now, others in the community do not believe that this illness is real and that the sufferer is lazy or suffering depression.
We engage health speakers to assist with the various symptoms of ME/CFS. They include doctors and specialists from New Zealand and overseas who are well versed in ME/CFS who speak at our groups. Other activities involve our small and large group discussions on various management techniques for ME/CFS.
What are some of the symptoms of ME/CFS?
Chronic Fatigue Syndrome has many symptoms- the main one being unrelenting fatigue which does not go away even with rest. Other symptoms include pain (fibromyalgia) on both sides of the body, Irritable Bowel Syndrome, migraines, orthostatic intolerance, cognitive issues, allergies and sensitivities and sleep disturbances.
How does ME/CFS impact on sufferers' lives?
In a number of cases the person is bed-bound, some can work part-time and only a few can work full-time. It is extremely important not to overdo activities as there can be a likelihood of a crash in health and it is much more difficult to get back up to a relatively normal function again
What are some of the common myths surrounding CFS?
It is a tragedy that some school-aged children suffer from this illness, too, and cannot explain why they are feeling so unwell. It is often wrongly assumed that the child is lazy or doesn't want to go to school.
What are some common traits of the illness?
ME/CFS and fibro normally occur in people who are high achievers and excel at either school or work. The sufferer normally appears well. There is no formal diagnosis, no blood tests, X-rays or scans for ME/CFS - it is a diagnosis of exclusion of other illnesses.
Do you have any recent stats regarding CFS/fibro?
It is believed there are 20,000 sufferers in New Zealand (probably more) who suffer from ME/CFS and fibromyalgia (pain).
Has there been any progress in causes and treatment for the illnesses?
There are many countries including Otago University in NZ, UK and US and several European countries who are doing extensive research into why the body breaks down and the immune system goes into overdrive after a major illness or other body trauma, and why some people recover and others don't. It seems that a virus like glandular fever, bacterial infection, severe stress resulting from an event or physical trauma can lead to ME/CFS.
Are there any new ways people are using to cope with their illness?
Yes, by addressing the symptoms which are wide and varied. ME/CFS /fibromyalgia is a complex multi system illness. It involves abnormalities that affects all body systems including brain, muscle, gastro intestinal and the immune system. Some of our members use vitamins, minerals and other supplements. There is no one treatment that suits everyone as many respond differently to body therapy, prescribed medication and supplements. What works for one person doesn't necessarily work for another. We advise people to check with their doctors or pharmacist before taking any new supplementation in case of medication interaction .
Pacing activities is thoroughly recommended for all ME/CFS sufferers. Full-on exercise is not recommended. Most of all, being believed that their illness is real and feeling supported by family and friends.
■ For more information about the support group or ME/CFS contact Liz at email@example.com or phone 027 224 95 25 or visit their Facebook page. If anyone would like to donate to ME/CFS Support Hawke's Bay - ANZ bank a/c: 010662 0106875 00. (Donations gratefully accepted).