United Kingdom: News from Forward-ME Group

[Utsikt]

The tone of the open letter and almost everything I can remember that you have published has been spot on. We should always be unequivocal in our criticism of research, policy, theories, proposals etc. Where I feel more care may sometimes be expedient is in the tone we use in discussions on here.

I have regretfully had a few comments removed by moderators (in a very kind way, I might add) because they crossed the line.

Some of them were written in anger and I would not have said the same when calmer. The were outbursts. I should have waited.

Others were poorly formulated due to a combination of brainfog and language barriers. Perhaps emotions made me click post too soon as well.

But regardless of that, I will never be able to write like Jonathan or Trish or you in English. In my healthy days I was able to write diplomatically in my native language. I’ve been commended for my ability to facilitate difficult and complex discussions. That ability is also gone.

I can usually only follow one train of thought at the same time. Thinking «how will this be received» or looking around for better ways to express thoughts is impossible. I’m lucky if I’m able to put words to my thoughts once.

So while I agree that some ways of communicating might in theory be more efficient, some of us have to make do with what we’ve got.

 

[Felis Catus]

There are also cultural differences. What is considered formal and polite in one language doesn't literally translate to another.
It takes a lot of exposure to pick up the linguistic and cultural nuances.

Some native English speakers don't seem to take it into consideration.

 

[NelliePledge]

What other spaces are people using to engage in publicl discussion with other people about ME/CFS including people who are severely affected and people who are carers for severe PWME where despite cognitive impairments and talking about horrendously stressful situations everyone is able to maintain diplomatic approach all the time? Because I don’t know of anywhere like that.

 

[Hutan]

Note from the moderators:

The topic of this thread is News from Forward-ME Group. Please consider if your post is about something recent happening with Forward-ME before posting. If not, please find another thread for your post.

 

[Sly Saint]

If they posted their paper / article and left it there, they'd have a lot more to read on their return but it would contain multiple viewpoints.

yes; some members are maybe too quick to jump in with a comment, often without having properly read the paper/article or allowed the poster to maybe explain possible issues. A bit 'shoot first ask questions later'.

 

[bicentennial]

We should not be the highest standard of scientific criticism .. the only place where any actual substantial criticism seems to be happening

professionals who come in, they are so obviously not used to defend their position and present arguments that aren't accepted in advance.

People who had to defend PhD theses fall apart at the slightest bit of substantial criticism, get emotionally defensive and usually give up

Things are catastrophic, our lives are at stake and we are failed at every single stage, but everything should be polite and non-confrontational?

might even explain why nothing has been done. If everyone is nice and congenial while our house is on fire and no one is doing anything

We have to be nice, but we can . be more critical about it than anyone else because no one is doing that . abnormal and dysfunctional context.

Sounds like one big mutual appreciation society campaigned to get governments agreed that it is a national stigma of extreme prejudice so it will all stop ... if we all be nice and co-operate. For 10 years people told me "Yeah yeah, we all know about ME now - no-one does that any more". 30 years back Social Services said the same thing in Annual Reports - "we don't do that any more".

young researchers and those with ME/CFS themselves might benefit from allowing the debate to play out before they respond.

So would I. Several replies later then I am much better informed. And I'd get a tea-break - maybe next year. Meanwhile I must trust Forward ME to retain and expand its diverse input and allow for differences to be stated too