#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Indulge me please - if the UK govt agreed to fund research worth 100million pounds over 5 years, how would they choose who to distribute it to?

 

My guess would be through NIHR because they have the infrastructure. I doubt they will ring-fence; it's the general policy not to although there seem to have been condition-specific exceptions like this fairly recent announcement on dementia:

And the Cancer Drugs Fund was another exception I remember reading about (see e.g. this paper for some background from 2011). But cancer and dementia have well-funded and well-organised charities and lobbying efforts; sadly we don't.

 

I read about DecodeME funding https://www.decodeme.org.uk/decodeme-dna-study-awarded-3m-funding/
Funded jointly by NIHR and Medical Research Council
Led by the ME/CFS Biomedical research partnership - made up of advocates, researchers and patients.

So the key players are all there, that’s who to engage

 

I got one prescribed by my GP some years back. However, secondhand chairs that suited me better were quite affordable with mobility allowance, so in the end I preferred to pick my own.

My GP understood that people who need a vehicle and a powered wheelchair can only lease one or the other via Motability, but the NHS often doesn't. They ask if you receive the mobility element of PIP; if you say yes, they say leasing a wheelchair is what it's for.

Thing is, for people who're not fully housebound, a powered wheelie's of limited use on its own because it's so hard to take it anywhere. Even of you're on a route with a bus every 10 minutes, you can still be waiting an hour for one that hasn't already got baby buggies on board. If you can't cope with adding unspecified amounts of time to every journey because you'll run out of energy before you get home, you need an adapted van as well.

 

how do people get so bad as this? It’s an important question to understand how she got here if you have any info on how this ‘position’ happened snd developed and someone ends up running the show on this?

I compare with Caroline kingdon and her knowledge and thoughts on the illness and it is fascinating to see the difference on what thee two say they ‘see’ etc

 

I am finding this. I now cannot leave home unless Mr B is with me because I can't use the power hoist to get the power chair out of the car. I can't bend to release the catches because of arthritis and generalised pain from EDS, nor can I push myself! I can walk only a few steps. I'm not on the motability scheme because I am too old, 77. I think a van with ramps may be the answer but I am very restricted in movements now so don't think I would manage it on my own. There has become no independence.

Do you think this is considered housebound? I'm asking because I'd like a flu jab and my surgery is only providing them for the housebound so they want me at the surgery. Mr B takes me to loads of appointments but he will have no life soon because of caring and that is not sustainable long term. What do others do?

 

Tell them your carer said they won’t take you, so you’re housebound without transport. The home visit nurses are out all day anyway, what’s one more on the list?

 

Thank you @MrMagoo. I'll try and have a go.

 

Oonagh Cousins just tweetet:

Just a heads up - I'm going to be on @SkyNews speaking to @skysarahjane (in studio!) this evening (between 8 - 9pm) about Long Covid, ME and the #ThereForME campaign. Looking forward to it!

 

@Binkie4, you could look at community transport/Dial-a-Ride schemes for some trips? I used to use our service a lot, including for work, before I got my van. It was like booking a taxi (except you had to do it at least two or three days ahead), and the fares were affordable because they were subsided. I suspect there aren't as many of these as there were because of cuts to council funding, but they still exist in some places.

You can find links to any that exist in your area here.

https://ctauk.org/find-ct-provider/

There are specialist taxis with vans/minibuses with tail lifts, but they're expensive—a driver explained that the cost of high-end vehicles and specialist insurance can be two or three times that of running a minicab. But it can be workable if you're going somewhere with family/friends, as you can split the fare between you.

 

Thanks @Kitty.

 

Thank you @Karen Hargrave for joining the forum. I appreciate the difficulties of trying to juggle your work, your health and caring for husband as well as trying to learn about ME/CFS research and politics and running a campaign. You have done an amazing job to date. As I wrote before, it must be daunting and almost impossible to know which advice to heed – as a patient, carer and campaigner.

Many of us are, or have been, in that position ourselves, and many of us have made wrong decisions.

I think this is a really good idea. Thank you. I don’t feel qualified or well enough to lead this myself but I would be happy to contribute if someone else would like to make a start. I will do some cajoling…

I think the most important points could be summarised in a post for the campaign’s website. And I think it would be a very worthwhile endeavour – particularly if it came from an emeritus professor of medicine with a deep knowledge of the issues and no conflicts of interest.

Karen, what is the word limit for your sub-stack articles?

 

Hi Karen! I just submitted an idea for your suggestions box. It IS about biomedical research, but probably not what you mean by it. I think it should be feasible and desirable to get relatively low-cost (pragmatic) randomized trials up and running to test repurposed drugs such as low-dose naltrexone in large numbers of patients, particularly if they are involved in designing the trials!

[edited to tag in @Karen Hargrave !]

 

The problem for me is that I get involved in reviewing many of these applications. Free discussion here allows all sides to be considered over time. Recommending how to spend a notional £100M is more difficult, especially since I think the answer is not to do that but to wait for a bit.

One thing I would suggest is always using the term ME/CFS because the more I see of the use of 'ME' the more I realise it is confused with the original concept of ME at the Royal Free, which was something quite different. And the great majority of clinicians are not going to take any real notice of appeals for ME. They might for ME/CFS

 

I'm extremely grateful to @Karen Hargrave, Emma Gore Lloyd & Oonagh Cousins for all that they're doing, what they've achieved over the past 2 months is really remarkable, I really do hope they get the full support of the whole ME community.

 

@Jonathan Edwards – do you think researchers, especially those in the relatively early stages of their careers, get enough training in making funding bids? Not only how to go about it on the various schemes, but how much time it takes, what resources are needed?

My fundraising was in a totally different field but training was pretty central to success, certainly with larger grants. If there is potentially a training gap there, could it be something that's worth pursuing funding for at this stage?


ETA: one of the most useful parts of my training was what not to waste your time on, because at this stage you ain't going to get it.

 

Not really The best advice on getting funding is copy what everyone else is doing, and of course you will get a grant for something that if was worth doing has already been done If you want to get a grant for something actually useful the best thing is to team up with someone with political clout. The downside of that, I learnt early on, is that they will probably just pinch your idea and make a mess of it leaving you out in the cold.

Research funding is a pretty unsavoury business. My advice would be to focus on developing good ideas that nobody else is working on.

Funding isn't our problem. Our problem is knowing where to start. The total failure to make any headway in Long Covid shows that $millions don't help unless you can think beyond the Twitter box.

 

https://twitter.com/user/status/1838312495666315513