ME parents are ordinary parents who happen to have children with ME, Myalgic Encefalitis, and therefore have some additional challenges. Fathers and mothers stand shoulder to shoulder in the struggle for justice and understanding of their children’s disease.
“ME mum” has become a concept, at least in some circles in Norway. It all started with the mothers, as mothers often are the closest to the seriously ill children, and meet the support system accompanying their children. Frustrated with the lack of help and understanding mothers sought together online, and found strength, unity and cooperation.
However, the fathers have always been there, they do their part and keep a close eye on what’s going on. They noticed that the ME-mum term backfired, since mothers – surprisingly – often are ascribed blame for their child’s illness. The fathers are often met differently, even though they observe and think the same as the mothers. It was time to join in. Now they will contribute with their stories.
We as ME-parents are proud of the job that we do. It is amongst the world’s toughest jobs: Taking care of seriously ill children, while balancing the interests of a health care system and support service that surprisingly often try to make our children even sicker. Not intentionally, of course, but good will does not help much.
It is our children and us as close relatives who must cope with the consequences of their «help.» Therefore, we closely follow the research both at home and abroad, and we have taken some very important initiatives through our letters.
Our letters are important.
We know that, when our GP refers to «a letter that someone who calls themselves ME-mums have written” and says that the letter has caused him to think. Moreover, for the first time the GP gives clear advice that is consistent with our experience of the disease as it manifests in our children! That feeling; our children are heard and their disease understood!
You can find the letters here (in Norwegian). The letter requesting assessment of breach of duty at Oslo University ‘CFS/ME team for Children and Youth’ led to a major article in VG, one of the leading newspapers in Norway. 🙂
In relation to ME, the services that should assist unfortunately bring along more superstition than knowledge.
We therefore need to learn and understand as much as possible of this disease, a disease that steals years from our children’s lives. Sometimes we feel very alone, and we need to communicate with someone who understands. We spend much more time at home than most parents – and at home, it has to be calm and quiet – and less time at work and in the community.
Social media can provide a social arena for us, as well as support and experience of others in similar situations. It is therefore natural to seek fellowship online, and to engage to disseminate much needed knowledge.
Our blog, ME-parents, is independent of the patient organizations, but happy to cooperate with them. We encourage all who are affected by ME to enrol in a patient organization!
We should very much like to have healthy children and to be working full time!
The ME-parents is not a secret sect, boiling soup on imaginary symptoms and trying to milk the system for support we do not need.
We share our experiences, the ups and downs. We help each other where the support system has nothing to contribute. That way, we also see that ME behaves relatively similar among our children, and we can benefit from each other’s experience.
– And we rejoice BIG TIME each and every time one of «our» children report being better, or even well!
Don’t judge us until you’ve walked a mile in our shoes!
Our shoes are painful to wear. They both gnaw and kipper. But we keep going.
We keep going for our children, and we will not give up.
We encourage all family members, friends, neighbours, public health nurses, doctors, DPI staff, teachers, school management – i.e. anyone who has the slightest involvement with children and young people with ME – to follow us on Facebook and Twitter. We share new cases from our blog, in addition to relevant cases from other Sources.
Follow us, read, make comments and share our stuff! We will try to translate as much as possible to English, but please be patient. 😉
Thank you very much!
The ME Parents
Some information on ME in English is available from this page.
Short URL makes it easy to share: http://wp.me/P3VLNe-i8