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]

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