Search results

Sorry to bang on about MS, I just saw this way there was a call for great funding for MS research and some interesting beliefs that people thought only of the R & R phase and didn’t realise how devastating it can become...

Just another SHOCKING interesting figure which really highlights the scale of the progress that’s been available to us versus MS . The ME association are saying that in their lifetime they have invested £1m into research, I think ME research uk who’ve been going about 20 years have invested...

In the U.K. hospitals are doing this initiative called pyjama day where staff wear them to demonstrate that they don’t let people lie around all day...

I meant more the charities who they sit with quarterly at the CMRC. I would have thought it would have just been slipped in the minutes as “good news”, a positive initiative or mentioned by the charities... again, as to us it seems the MRC is a blank walk of nothingness. When I saw this...

Yes, I’m just surprised it wasn’t promoted. I have essentially zero trust or respect in them on CFS after the years as is evident. It was Also interesting that this American researcher seemed to think things had really improved in uk whereas we feel nothing’s changed..., is that what he’s being...

I think ME is especially vulnerable as it can lead to lasting harm not just an unpleasant experience

Yes that’s great, previously we have had so few high profile researchers interested over here. I’m really impressed by what Ron Davis is doung and hopefully that’s now three new UK Zscientists who don’t believe CFS is a beliefs and exercise issue. My query still is if it’s an MRC...

When I said to the doctors I wasnt getting sleep on an nhs ward, bright fluorescent light on till midnight, old ladies toileting through the night, nurses changing cannula at 6 am because the day staff would be too busy and then all go from 6am onwards as people wake and lights go on, I was...

ah I see it’s those people from uk collaborating, which is great. A shame uk couldn’t get them involved but great America could. This was a recent OMf grant wasn’t it, so I think the funds is coming form them not MRC but it’s made to sound other? , I hadn’t seen this talk so thanks. However I...

I have no knowledge or and have heard no announcement on this so this is completely new to me. Is that right what he says that MRC have put a call out, is he suggesting that part of this research was in response to an MRC call out. Does anyone else from uk have any knowledge on this ? Thanks...

Regarding MRC being reluctant to intervene and set a precedent. Well it did do so for HIV several years UNTIL it was felt the field could progrsss alone, one year for us, regardless of whether we could fly alone (NO) and for other conditions, even if that’s more umbrella stuff. However it...

This might have been more useful in the 90s when there was debate as to whether to diagnose us at all and if it was harmful too. Perhaps that still lingers in some areas. CFS versus nothing wins but CFS generally is a handicap name afaic.

This is good but i don’t really understand Iimes direction now. I asked them what they were doing with the money originally raised for a rituximab trial and that’s still to be decided. I personally am not donating to something vague at the moment when there’s already money there unspent. I...

There is the possibility that uk charities have a lack of people to give funds to even if they had them. I don’t know if that’s been a factor in the past. Equally I haven’t seen charities have a pool of money there and say we are open to researchers in various key areas which I think does work...

It’s versus MS that I think is the most interesting comparison because of age affected and disability. If half of pWME aren’t diagnosed that brings us to a population the size of MS. Is the issue that the NHS largely doesn’t direct and inform so higher function people plod on with CFS or an...

which ones ? Cancer research obviously and it’s natural cancer can raise funds anyway, potentially terminal, common we are told etc. age uk would have shops, I wasn’t aware of the others but am long-term housebound...

I don’t really understand why we are comparing ME with intellectual disabilities. From my limited experience with some people in that area they don’t discribe themselves as suffering or limited in terms of pleasure, fun, experience. Unless you are talking about really limited people and then...

But for comparable conditions we are so much worse. ME isn’t like intellectual disability, some with autism actually want it celebrated not treated , obviously more severe cases are very different. I think most value is through contrasting us with long term disabling and distressing conditions...

That’s a good point. Yes I think so we should, I actually think that money can sometimes be raised if people see it going to a specific thing they believe in. Alzheimer’s has an effective simple education video to stop people seeing it as just old age but something that could be prevented or...

But that’s not something we as patients have been able to prevent the past decade, it’s still there and as long as it is there - caused by the medical organizations - our friends and families simply aren’t putting in like others.