[daisychainParticipant]

Hi

having just scanned though the general topic blogs and recently read tom 's posting on scientific research I wondered if perhaps it might be a good idea to have a dedicated self help topic blog in this section from patients, carers families friends that have researched and benefitted from ? resources. Such as books, web sites, podcasts, latest scientific news, nutrition, acupuncture etc

What do you think?

Dawn x

[MothasParticipant]

We have proposed these kinds of dedicated threads before but they never seem to happen.

My personal preference would be to keep the dedicated science research threads separate from the self-help stuff as former has a firmer basis in a proven knowledge base.

[EvaParticipant]

Hi- I agree that it would be great to have a separate listing for any interesting scientific articles or findings about different kinds of treatment. It is easy to lose such references once we've encountered them:having them in a file would be nice.

The self help articles such as advice about nutrition or exercise or highly experimental therapies can be immensely useful/fascinating but they are in a different category – 'alternative'. Putting these in a separate area means we are allowing patients to access information on them but we are not implying that these methods have been assessed by more rigorous clinical studies or evidence based medicine.

Eva

[daisychainParticipant]

Hi Tom

I agree with keeping the myeloma UK official stuff separate – where I was coming from is the stuff like you found recently articles being put into this blog section but have a separate listing for them as mentioned in Eva's blog Obviously myeloma UK would therefore not be held to account about the information were posting as is currently happening with the information were posting

Dawn

[daisychainParticipant]

Hi Eva

That's exactly were I'm coming from.

Dawn x

[rebeccaRParticipant]

I agree with Eva re categories and would love to be able access such info and have peoples ratings of books etc. I am a lazy soul who devours information given to me but often find it hard to find my own sources and trust they are worth buying ,so much prefer to get books etc that others have found useful.
Have read all of Dawns recommendations and then passed them onto someone else with cancer.
My kidney function is very poor and another member has kindly/privately shared his research on kidney health/improvement. I had researched it but did not find the in depth detail I wanted and so have found his assistance invaluable – in promoting health and also because it makes me feel proactive. Sharing and caring is the name of the game.

[daisychainParticipant]

Hi Rebecca

This is what it's all about sharing and caring and I'm so glad some of the infraction I've provided has helped your friend

Dawn xxx

[adminKeymaster]

I would also find such a section useful! I read lots of scientific stuff that gets posted on the Myeloma Beacon as I feel it gives me an advantage when discussing issues with consultants. Also, I find the sharing of all the 'alternative' and self help information useful and interesting, even when I'm not necessarily convinced by particular aspects. Keeping such an area separate would provide people with a choice on whether to read it and hopefully discourage any potential negative comments and criticisms, which I personally, do not find helpful. Tx

[Author]

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