UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day

V.R.T. said:
Asking for full SequenceME funding is the right ask imo. It's what the community needs. Building good services will take time and requires getting the right people involved. Asking for it in this context as you say would probably mean just getting screwed over by BACME again.

SequenceME isn't that expensive compared to spending on other illnesses. I don't see why we shouldn't ask for what we need most.
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Now is a time to write to MPs about funding Sequence?
And a time for Parliamentary Questions about funding Sequence also.
.
 
V.R.T. said:
But I don't see why they won't with enough pressure.

Remember just over a year ago when it seemed to be a sure thing? They've made a huge mistake not funding it, and if that is pointed out to them loudly enough, often enough and publically enough they may well change their tune.
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It was definitely a mistake and I’m very interested in how it came about and who made the mistake. More interested in just getting the funding but still, it was all very odd. The way the funding was given but in a very specific way looks like some people wanted to fund it and some others (be they government or other funding bodies like the MRC/NiHR) did not so some creative routes had to be used. In other words, who is the ‘they’?
 
Lou B Lou said:
Now is a time to write to MPs about funding Sequence?
And a time for Parliamentary Questions about funding Sequence also.
.
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Go for it https://s4me.info/threads/asking-uk-mps-to-get-behind-funding-sequenceme-and-wider-investment.45551/

I really would encourage everyone reading this thread to do anything they can. IMHO there is never a right or wrong time. If anyone wants to do something just do it. Instead of writing a post here write an email. It doesn’t need to be perfect it doesn’t need to be coordinated it doesn’t need to be long. Every little bit helps whenever anyone feels able to do so.
 
This is the sort of unsolicited advice that Beth is going to be receiving on social media. This one from a nurse in NYC.

"Hi
@BethDobbin
I'm a nurse in NYC also suffering from long covid mecfs and I wanted to tell you about some stuff my doctor has tried that has helped me. Prescribed: IVIg, ivabradine, acyclovir, Meloxicam. Over the counter: Creatine supplement, mitopure.'

"I've also done a Stella Ganglion block that helped."

"I was also checked for May Thurner and it turned out that I had that. That can often be a commodity for folks. Please feel free to DM me if you have any questions."

 
There’s a man obsessed with microclots who always posts research graphs

There will be a brain trainer or two

Someone will chip in about having EBV

Someone will say they were burnt out

People are commenting that she overtrained

People asking why she isn’t campaigning for (other disease)

The comments sections are just depressing
 
Letter from Tessa Munt MP in the Friday edition of The Times:

Better ME funding​

Sir, It was timely that as you reported on how the government plans to address the challenge of almost one million young people not in education, employment or training (“Devolution plan to move youngsters off benefits”, Nov 2), you also covered the call from 360 sportspeople to Andy Burnham to fund research into myalgic encephalomyelitis (“Sprinter inspires a demand for ME funding”, Nov 2). About a million people in the UK live with debilitating ME-like symptoms. Most develop the illness in their teens or thirties, and as there is no treatment on offer many ME sufferers face decades of poor health and being unable to work.​

The government should again look across the North Sea for a solution. In Germany, where every individual has the right to participate in working life, (“Can German model solve the UK’s long-term sickness challenge?”, Oct 16), and economic modelling has shown that ME and long Covid were each costing 0.7 per cent of GDP annually, the government chose to invest €500m over ten years to find a cure for such conditions. That is the sort of funding that Britain’s world-leading researchers on ME deserve.​

Tessa Munt MP​
Chair, all-party parliamentary group on ME​

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Robert 1973 said:
Letter from Tessa Munt MP in the Friday edition of The Times:

Better ME funding​

Sir, It was timely that as you reported on how the government plans to address the challenge of almost one million young people not in education, employment or training (“Devolution plan to move youngsters off benefits”, Nov 2), you also covered the call from 360 sportspeople to Andy Burnham to fund research into myalgic encephalomyelitis (“Sprinter inspires a demand for ME funding”, Nov 2). About a million people in the UK live with debilitating ME-like symptoms. Most develop the illness in their teens or thirties, and as there is no treatment on offer many ME sufferers face decades of poor health and being unable to work.​

The government should again look across the North Sea for a solution. In Germany, where every individual has the right to participate in working life, (“Can German model solve the UK’s long-term sickness challenge?”, Oct 16), and economic modelling has shown that ME and long Covid were each costing 0.7 per cent of GDP annually, the government chose to invest €500m over ten years to find a cure for such conditions. That is the sort of funding that Britain’s world-leading researchers on ME deserve.​

Tessa Munt MP​
Chair, all-party parliamentary group on ME​
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The second para is good.

Tho I do not get the focus on work as it won't be read as it is in Germany when they say 'the right to participate in working life' in the current circumstances by most I suspect.

I'm concerned that the focus on the direction the first para takes is problematic, and I've seen it before I assume people think it is smart but actually it is open to twisting. In fact I think the messaging that keeps being used along those lines has been consistently off (both using big figures and me-like and then highlighting employment as if it is a winner rather than backfire without any nuance) and needs to be significantly reconsidered.

When I read it in the context of Beth trying to make headway on a different point, and in the general of the two needing that coherence+detail sorting out. That job is done outside of when articles come in and someone has to respond fast, messaging should be an ongoing understanding of what not to say and the needles to thread.

Has ME/CFS even explicitly being mentioned or listed on the target of NEETS back to work nudges type stuff? Before this?

I know letters to are short on words and have a format but all these contradictions between articles due to not having worked up the nuance on these different areas to ensure responses can be to each aspect whilst not undermining a bigger coherent and clear picture by contradicting each other are an issue.

I'm really concerned that we have an article about severe ME/CFS finally cutting through - and we are seeing the stats chosen being for 'ME-like symptoms' in order to use the 1 million. Immediately taking the focus away from those stuck dying in hospitals, bed-bound at home - who need urgent medical care from actual real medics and research that might mean they get out of their room one day.


The move to talking about ME-like and 'symptoms' sounds like when the bps try and put us under MUS and that's what Heritage is doing, trying to MUS the illness and clinics. It is a real problem. It plays right into backing this up.

And the bps who immediately after guideline made clear they were going to use the lie of 'yeah we'll keep harming and not change because we'll just claim there are some with CFS/ME' and so to push for 'anything but ME/CFS' services that as before still harm those with the illness being funded on a fib it's OK cos it might help those who don't.

It misses the whole issue of it being a condition and not symptoms and does bps's job for them - and gives a carte blanche using those terms to the Heritage sophism of harming those with ME/CFS by treating people with a condition that are harmed by sleep hygiene as if they are well people who need coaching in sleep like well people get given (don't know if it harms them too but it's probably not as immediately and swiftly destructive) and then insert each of the rest.
 
I think the phrase "ME-like symptoms" may come from AfME - it's a phrase they've used before to refer to the number of ?ME/CFS-like cases who have been diagnosed with LC.

The problem with the phrase is that any health professional reading it will just assume that it's a euphemism for "psychosomatic", same as MUS or PPS. Also, it's the wrong emphasis: for advocacy purposes, we want ME/CFS to be conceptualised as a discrete illness with its own distinct patterns & dynamics, not a motley collection of unexplained symptoms.

And they're still using a prevalence estimate that is almost certainly wrong.
 
I’m grateful to Tessa Munt but I also agree with Nightsong’s comments above.

If ME/CFS charities and organisations want to advocate for conditions which don’t meet the ME/CFS diagnostic criteria they need to make that clear, and they need to make it clear how they are defining those conditions. “ME-like symptoms” is not a helpful term IMO.

If someone with Long Covid meets the ME/CFS diagnostic criteria they have ME/CFS following Covid.

Tessa Munt also writes: “Most develop the illness in their teens or thirties”

The most likely ages for onset are when people are in their teens or thirties but I don’t know if it’s accurate to say that most people with ME/CFS developed it in the teens or thirties. Can someone clarify?

I thought it was helpful to compare Germany’s investment with the UK’s. If the UK government were to ring-fence funding for ME/CFS research in addition to funding Sequence we would have a battle to ensure the money wasn’t squandered but to me that would be a nice problem to have.
 
Agree with the other comments. It seems made after trying so hard for so long to get strict definitions and a clear criteria for what the condition we currently call ME/CFS is, that our own representatives and advocates then muddy the water.

On the prevalence and economic impact numbers it’s not smart politics to think a bigger number is always better and more impressive and will have more impact.

But the comparison to other similar sized countries and economies is useful I think.
 
NelliePledge said:
In the current version of the BBC article the end is a quote from DHSC that refers to the plan and the partial funding of sequence it also says something about funding trial into potential new treatments what is that supposed to be?


Here’s the sentence
"That is why we are supporting cutting edge research into ME, including a first-of-its-kind programme studying genetic factors behind the condition and a clinical trial for potential new treatments.
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"That is why we are supporting cutting edge research into ME, including a first-of-its-kind programme studying genetic factors behind the condition and projects exploring a future clinical trial of potential treatments.

The wording has been changed to something closer to being justified based on facts. While still dangling potential new treatments to make things seem more advanced.
 
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