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As we know the problem of patient groups being taken in by researchers with this agenda is pretty widespread internationally. And they have also gone as far as setting up ‘tame’ patient groups so they can guarantee compliance.

Agree @Andy we would all obviously ideally want to see more money it is absolutely a step in the right direction . It is a great achievement by Evelien and others involved and we definitely need to recognise that.

I’ve never been in the category of severe ME I have moderate ME. On days when I’m at home on my own schedule with no demands just pottering around I can almost forget that I have any cognitive difficulties. I can read short online posts ok for a few hours and write shortish posts. But even...

Great news. You have a good relationship with Healthwatch and I’m hoping that will influence them here to maybe have a meeting with me next year. It will be so useful to compare the ME desert here to the set up you have over in Sheffield. I really want to make a step beyond just being one...

:banghead:

I would have thought this would be a priority for the charities. If they can’t fund need to get bidding for lottery funds, get on to some of these trusts that are happy to fund Crawley.

From 2010 and 2014 respectively

Ah ok yes I didn’t think of that.

Clicked on the link to the article corresponding author is Manoj Sivan. I can’t copy the email address from the pop up box tho.

@Gecko hope it’s ok to tag you. id be interested to know whether Sheffield Healthwatch are going to be sharing this with national Healthwatch and other local Healthwatch organisations. I’m going to use this to contact my local Health watch and the ICB in the new year.

Yes it grates on me. For one thing as someone who has gradual onset ME I don’t actually know precisely how long ago I started being affected by the illness. Certainly over 10 years before diagnosis. Yes I did normal unexceptional active stuff at one time, country walks, aerobics class for a...

Welcome to the forum @winston :thumbup:

Just tagging @dave30th in to make sure he sees your posts @Midnattsol

The MEAssociation one https://meassociation.org.uk/product/mea-alert-card/ I’ve not got one just sharing.

That’s a good report from the Facebook group

yes @Wonko was going to write the same post

They really think they know so much more than we do about how we should be living our lives.

Yep surely going into or looking out at your garden if you have one or good tv nature documentary or YouTube meditation video of countryside would do the job

Basically being in nature https://en.wikipedia.org/wiki/Nature_therapy

They described FINE 2006 as recent. Strange concept of time. Also list long term conditions and include MUS in the list as if MUS is actually a condition.