Get ready with the 'DELETE' key if you are getting fed up of my researching.................... but for others, this is interesting!

[Ovingite]

Well, I have got the bit well and truly between my teeth in trying to understand fatigue, and why it hits so many of us so badly. Earlier, I posted the results of a US study into fatigue, and I have now come across a superb report (The Impact of MPNs on Patient Quality of Life and Productivity: results from the international MPN Landmark survey) published by non other than Claire Harrison et al in August 2017. Sorry, I cannot find a way to attach it to this post, but you can access it and download as a pdf at this address

link.springer.com/article/1...

August 2017 was just at the start of my MPN journey, so it may have been posted previously, but it's worth another read as it reflects so much of what we all individually experience from our MPNs. It also offers suggestions on how treatment regimes could be improved, but as far as I can see it does not enter into the mechanism for rolling out these improvements to the wider medical profession. That would seem to be the obvious next step, which might be an interesting question for someone to raise at one of the upcoming MPN Forums (unfortunately I cannot attend this year, otherwise I would ask it myself)

I hope you find this as interesting as I did

John

[ksos]

Thanks, John. I really appreciate all the research you can find!

Kim

[Peterwi]

Very interesting read, thank you

Winni

[Inca]

I appreciate your your finding out things we need to know,I really am interested but not the sort to 'dig deep'....so carry on ,great you can help us all with your findings .Sally

[Loubprv Volunteer]

Thanks John. I too am constantly on the lookout for interesting stuff.

Will read Claire’s paper.

Louise

x

[Rachelthepotter]

Keep the reseach coming: very much appreciated. Rachel

[MazCorcoran]

Thank you for your research . I have to present some information to my employer about my condition and I’m going to use this paper. It goes into a lot of detail about how an MPN can effect us at work.

Thanks again...

[Ovingite in reply to MazCorcoran]

Hi Maz - glad it was useful to you. Whilst I was delving I also came across this short paper which specifically focuses on the effect of MPNs on employment

voicesofmpn.com/pdf/impact-...

It is from an American group called Voices of MPN, but I think it should be equally relevant to us Brits - it's also a much easier read

As I am well past my 'best before' date, I don't need to influence employers any more, but let me know if it is useful and if it is I will post it for others to see.

Hope it all goes well for you

John

[mammared]

Any and all research by folks on this forum is much appreciated by me. Thank you for your efforts.

[rkhabtec]

Thank you

[Garden987]

Thanks for your very informative information. All very well but do we know what causes these MPNs? I am struggling horribly with Farigue - also have CFS but I find it hard to understand why no cure or cause has been found.

How are we supposed to exist? I there any Bodyvwho really is interested in other than statistics? I found y our information interesting but rather frightening as no on seems to know how to alleviatethisbhirrendous condition. Good for you for researching and passing it on. All good wishes to you. Mary

[mhos61]

Thanks John, much appreciated.

[Hidden]

Thank you John

Research away. Love reading the results.

[yarrowleaf]

Dear John! -- Thanks a lot. These results I'll show to my hospital, cause they refuse to accept other side effects/symptoms than "mild flu" !!!!! (or are they lying :/ )

Greetings - Yarrowleaf

[Annie46]

Thank you for the link John . I found it oddly reassuring that my array of challenges are typical for ET . I’ve saved the link . Annie

[Bluetop]

Thanks -really interesting