The Burden of fatigue and quality of life in Myelo-proliferative disorders

[ETphonehome]

mpninfo.org/pdfs/QualityOfL...

[JediReject]

Thank You my friend I shall absorb this later. All relevant info' is useful. Cheers for sharing

[ETphonehome]

You're very welcome JR. Anyone that has an MPN really needs to read it particularly if they're having problems convincing a medical professional about your symptoms.

[Hidden]

As one haematologist said during a very good talk at a forum. They are haematologists and they know the effects on the body of the separate MPDs but they cannot know what we sufferers feel. That is so true. Their job is to control the conditions for us and it seems it is not their job to understand its effects on the morale of the sufferers nor the extent of the fatigue we experience and I sense a massive underestimate of this from all other quarters. There does seem to be a missing part to the jigsaw which no one is looking for. Although we are all delighted to at least have a diagnosis and treatment to slow the condition up it would be nice after years of trying to convince GPs to listen in order to get to that stage, if they learned to keep on listening and maybe it would be a good idea for the forums for sufferers to include invitations to some GPs, maybe one to represent a specific area, or some other health professionals to attend the forums in order to help recognise the symptoms. Another thing to consider is that because we are told of the high instance of deaths from strokes and heart attacks in the general population it might be a useful direction to take to test the blood of these unfortunate people even after death to see if they carry one of the mutated MPD genes instead of the cause of death just being written on the death certificate. Until this can be done we can never really know how common these conditions are. Maybe they are not as rare as we all think.

[ETphonehome in reply to Hidden]

Very true CrazyDaisy.

I think one of the fundamental problems of dealing with GP's is that they are used to dealing with tangible conditions and solving patients problems. Often the problems we have with MPN's are not easily solved and there are no quick fixes. Sometimes we just need them to listen and consider.

Also, very few GP's have much experience of MPN's and they don't like to admit they don't know what to do.

I have had appointments with my GP where I have suggested the cause of a problem or a possible course of action and in my experience this isn't always conducive to a good doctor patient relationship. In my experience some GP's and haematologists can be very defensive if you offer too much input.

[KevinJH]

Thankyou for posting this link ET, a very worthwhile read. What I think would also be interesting is how any of the findings may (or may not) have changed as the article is over five years old and what with some of the changes to drug regimes, whether there has been any noticeable changes to the tables shown.

[ETphonehome in reply to KevinJH]

It certainly would be good to see a more up to date version of the study Kevin. Hopefully there will be more in the near future. Research into MPN's seems to be gathering quite a pace at the moment.