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I get carb cravings during PEM. Also some mild nausea.

Yes just wondered how wide his reach is.

Anyone have any knowledge of what the readership of this is? I saw there were 45 comments but 99% seems to be spam. It’s interesting to read but is there a readership among health professionals.

Will you be involved in the LC project @Joan Crawford

They are working with AFME and other charities so I’m sure that will plug them in to APPG when it’s formally reconstituted. I actually read the full document today and I thought it was a very good high level summary of what needs addressing evidenced by experience. I hadn’t written to my MP...

I would say that the criteria for approving anyone for assisted dying must include that any deficits in quality of life are not due to lack of access to appropriate care and support services, effective pain relief. I have not researched the situation in countries where AD is available so don’t...

Apparently some of the Australian Cricket team have had “illness”

Certainly I would like to think some of the peers are getting past professional politeness and asking direct questions to such as Chew Graham how come the lack of support hasn’t been addressed, what have you been doing for the last decade or so?

But that list was from 20 years ago so he may no longer be active - his name wasn’t associated with the last APPG.

Thanks, for me that makes a difference, it’s not my personal experience but the most important thing people need to know about ME/CFS is that like other illnesses there are different severity levels and you can be severely or very severely affected.

Are you thinking of doing awareness advocacy @Hoopoe

They probably don’t even realise the irony.

Thanks for posting that one @Hutan Some of the medications people with ME/CFS get prescribed for pain/sleep have weight gain as a side effect, Definitely poor sleep is a contributor to overeating, and as PEM makes my sleep even worse it also affects my food intake with carb cravings.

I guess it is positive if people in health professions with a psyscosocial perspective or a history of one are signing up to this. A bit like cross party support in parliament. It needs addressing urgently so it’s a case of the more support the better. And hopefully some discussion ensues...

“Functional research is moderately interconnected to internalised beliefs of the author’s supervisors” :whistle:

But it is good to see as many of us expected that the use of trackers is becoming increasingly common and this appears to be over a long timeframe

Yeah I noticed on Monday when PEM started I could hear tinnitus in the afternoon whereas normally only registers at night

I’m bringing up using a rollator to start with and I’m thinking of getting one soon. I’m taking the scooter more seriously because one of my rellies who knows my capacity as well as anyone else does actually threw it into conversation a few weeks ago. Plus I’m in 60s now so I think the too...

Really helpful info thanks @Kitty

I don’t currently use anything other than a stick although I’m giving serious consideration to a rollator and possibly a scooter of some kind. I can walk eg 130 metres to my relatives house reasonably well but it is the effort in getting back and the big impact of using that energy on limiting...