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Research on Families of Children with ME/CFS

Comet

I'm Not Imaginary
Messages
693
I don't want to derail this thread, but I do want to apologize for a couple of things - especially to @ArgieM.

When I went to the link in his first post, it seemed to me like the study was to be about parents' stress making children psychologically sick. I read it several times, to try be sure, and obviously I completely misinterpreted. I also saw nothing about illness criteria on that page, so a red flag went up in my foggy and apparently jaded mind.

So, I wrote a bit of a rant which was basically about illness criteria (CCC vs Fukuda vs Oxford, etc), and that there is a difference between being chronically fatigued vs having ME/CFS. I also said that although he may have the best of intentions, a study like this (parents making children sick, I wrongly thought), could have a severe negative impact on children and would he please reconsider.

I think that the paragraph from my self-deleted post that was quoted above was the most inflammatory thing that I said, and I take 100% responsibility for having posted it. However, I want to clarify that it was never my intention to imply that Dr. Medlin was lying or that his children were not sick or do not have ME/CFS.

The flavor of my original sentence "Whether or not you have children who have ME/CFS, obviously I have no idea" was intended as something along the lines of 'Of course I don't think that your children don't have ME/CFS, but, obviously I don't know you.' I was actually trying to ramp things down, not up. As I mentioned earlier, posts are now missing that would make the meaning behind this poorly worded sentence more clear, but I don't feel it is my place to go into it. An earlier poster even said something about not accusing Dr. Medlin of lying, and I had no idea, until later, that this was addressed to me, as this was the opposite of my intentions. But I wrote the words and take full responsibility for having done so.

Most important, I want to apologize to @ArgieM/Dr. Medlin for coming across as not believing him about his children's illnesses. I am so sorry that this is the way my words came through. We are all fighting being disbelieved and this is the last thing I would want to do to anyone. Dr. Medlin, I hope you can accept my sincere apology.

I also apologize for thinking your motives were only to get published, Dr. Medlin. I misunderstood your intentions and I am sorry.

On a slightly different note, if I have offended a member of PR, I also offer My apologies. I can think of one post where I made a joke that could have been misinterpreted as poking fun at someone else, when I was intending to poke fun at myself. It has been on my mind and I have been wanting to clarify this for a couple of days. I can offer excuses for not having done so yet, but really, I should have made it a priority and will go clarify that post now.

Because of my ME and also having a touch of Tourette's, I sometimes I have a hard time putting the right words together. Or sometimes I make jokes, which I hope have not come across the wrong way or caused PR members to be offended. If so, please let me know so that I can clarify and make amends. This is why I use a lot of smilies, so that I can try to get my meaning across. A writer I'll never be.

Last, I want to say that I was not accusing anyone of some sort of nefarious post removal (if there is such a thing). In an earlier post, I said that several posts had been removed. However, I have been told that there were two posts removed, and, of course, I have no reason to doubt this. This was just a mistake on my part. I didn't know if the posts were removed by the posters or by the mods, nor do I think it matters, and it was not my intention to exaggerate or accuse anyone of wrongdoing. I was simply referring back to something that was no longer there.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
@ArgieM,
In my part of the world, Dr Kathy Rowe of the Royal Childrens Hospital in Melbourne, Australia has authored a number of papers about children with ME/CFS. As far as I can tell, Kathy Rowe doesn't subscribe to GET and the worst of the psychosomatic theories. Have you seen her work?

Dr Sarah Knight (of the Royal Childrens and Murdoch) is also active in researching ME/CFS. My son and I participating in one of her current studies. I have written about my concerns about that research elsewhere in PR. I am not yet completely clear on what perspective she will bring to the analysis. I think she is presenting at the UK CFS/ME Research Collaborative's conference on the topic of pediatric care in September 2016 - it will be interesting to see what she says.
 
Messages
6
Thank you so much Comet for such an amazing apology! I hope that you will believe me when I say that what you said before only stung for a moment. People with ME/CFS have suffered so much and yet have been misunderstood, abandoned, betrayed, blamed, and ridiculed by the very people they trusted to help them. It has happened to my family, too--many times. So I understand. We have all learned to be wary, we have all felt frustration and anger at the injustice of it all.

And thank you to those of you who have pointed me to research by others. I have already collected quite a few studies by Jason, Knight, and Rowe for my review, but if you run across other studies (that are not biased!), let me know.