– ”It’s tough to see this in print,” Stine says. “It somehow makes it more real, although what appears in such an interview obviously only is part of the reality we live in, the tip of the iceberg.”
The Norwegian women’s magazine “KK” has interviewed one of our editors.
Read full interview in English here
Norwegian original of this post
Stine hopes that giving voice and face to those affected – directly or indirectly – by ME, will help others. By making more people find good information both on the patient associations’ and our website. It may also be useful to sign up in one of the ME association’ Facebook groups.
Another important factor – which also is one of our goals in the ME parents – is that people around those affected will get an idea of what ME may entail. It is extremely difficult to understand ME for those who do not experience this backward disease very closely. A disease where nothing of what we have learned about health and cause-effect adds up. Hence many of us feel compelled to explain both the disease’s nature, the measures they have had to implement, the treatment options they have chosen to try – and not to try, and so on. This can often be an additional burden, which can be remedied with knowledge and insight.
The response to the interview so far has been exclusively positive. Stine says that it formally has rained hearts and supportive messages in all channels. She’s thankful for all support. A few people naturally wish to give advise on treatment that has helped them, but like so many others, Stine and her daughter have tried a lot and considered far more of such. Now they are waiting for the research, and in the meantime they continue with what they see as helping the daughter to better quality of life.
There is a lot of good and interesting research going on now. Hopefully they can soon identify subgroups of ME, thus saying who is likely to respond well to what treatment. As for now, what makes someone recover or improve significantly, makes others much sicker. There are anecdotal evidence of many different treatments, but the arbitrariness of who gets better and who gets worse gives many a sence of gambling when they consider new methods. It also takes a lot of effort to try again and again without knowing. And most of it costs money. Right now we are very excited about the protocol in the big RituxME study that will be opened this autumn, and also the follow-up studies of it. In addition, the Norwegian studys on both Cyclophosphamide and the four studies that received funding this summer, will provide interesting and useful knowledge. In addition, there are several international studies.
Others, with no experience with the illness, say the interview is brutally honest. We who have lived with ME in the family for a while, know that unfortunately it is not. ME gives so many harsh symptoms, and you get into so many difficult situations that few would think it possible before experiencing it themselves. It would also require a whole book, and not a two-page interview, to convey it all.
– And as another ME mom comments:
That’s just the way it is. The lightning struck in our lives.
We are not discouraged, but naturally this is hard.
The ME Parents