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

V.R.T. said:
My experience is a lot of these people are strong believers in the covid persistence hypothesis who are aggressively in denial.

Or just people who are rightly very frightened of ME.
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There are a good few overinvested people with a pet theory or point of view, and they seem quite angry that everybody doesn’t think the same way as them. That’s the curse of social media.

Beth & Co have played a blinder with this so far.
 
Dr Carrot said:


Apparently the article caused some kind of infighting between Long Covid people online, some of whom say that it’s a distinct illness and it’s wrong for her to say she has ME/CFS, which seems moronic to me!
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It is moronic. There's an odd crowd on twitter (usually AI profiles) who just get very upset if anyone mentions MEcfs. They seem to be whipped up by a few who are pretty misogynistic too. But it's a crap illness and there isn't enough to go round, and no tests - and people get upset - but to start fighting about this seems kind of counter productive.

Research needs tighter subgroups in Long Covid and ME is one of those if a decent criteria is used. So it benefits everyone in the end.

But back more importantly to Beth - she has really cut through - it's a great headline and she really seems to have done her homework.

I would have liked more defined asks in her letter (as per the ACT UP way) but those can also be discussed later - and she got alot in one page!

I hope Burnham replies & shunts Yvette Cooper into action.
 
V.R.T. said:
Agreed. The only thing I would have liked to see is a request for SequenceME funding front and centre in that letter to Burnham.
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We’ll never get everyone to agree.
I think they’ve done a good job in putting together an “ask” and we will have the (thank you ME for the PTSD) inevitable freak out about whether, if we get anything, it will go to the right place/right person or will the MEA be campaigning for some idiot to be ME tsar, funding “good vibes” training for NHS clinics to deliver, etc.
 
obeat said:
If government is capable of joining the dots, there's Chris Ponting advocacy for SequenceME ongoing.
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I think my concern is more that they might do something symbolic in response to Beths letter, rather than fund SequenceME, which is material and likely to have a major impact on research.


MrMagoo said:
whether, if we get anything, it will go to the right place/right person or will the MEA be campaigning for some idiot to be ME tsar, funding “good vibes” training for NHS clinics to deliver, etc.
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That's why I thought it would have been good to ask specifically for SequenceME funding though. Its a specific ask that can't be 'misinterpreted' as expanding the BACME project or making Michael Sharpe ME/CFS tsar or something equally awful.
 
It’s really tricky and I feel for Beth. She is aware that because of her public profile she is in a position to reach a wider audience and potentially affect government policy. But that is a huge responsibility, particularly for someone who is severely affected.

Different patients, groups, physicians, therapists and scientists have different ideas about what is known and what should be done to advance knowledge, services and treatments.

When I was first involved in advocacy I got things wrong, and I’m sure I still do. We are extremely lucky that Beth has done such a good job so far but I worry for her that she will pay for the exertion, and I’m concerned for her and for us that one individual with such limited capacity has such responsibility. [Edit: And mindful of the mistakes that others have made in the past.]

I don’t know if Beth or anyone around her will be reading this thread but I agree that asking for funding for things which are tangible and uncontroversial is the best approach.

I think everybody would agree that we need far better services for everybody with ME/CFS including people who are severe and very severe. There is some disagreement about what those services should look like but I think most on the non-BPS side would agree that they should be led by physicians who are connected to research institutions, and include specialist nurses.

I also think that most agree that we need much more high-quality research but again there is disagreement about how that should be achieved. I favour ring fencing but I acknowledge there are risks with that approach and that not everyone agrees. However, I agree with VRT that asking for funding for funding for Sequence ME & LC would be a really good option because it is uncontroversial and it is guaranteed to tell us more about the causes of ME/CFS.

If it were me I think I would be asking for full funding for Sequence plus ring-fenced funding over the next 5 or 10 years. But I don’t envy the position Beth is in, and I am sincerely grateful to her for what she has done so far.

My hope is that Sequence, like Decode, will make the path forward much clearer to all.

Finally, I note that while the story has been reported on the BBC and gained traction on social media it doesn’t seem to have been picked up by the newspapers, which is a shame.
 
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Agree with so much said. I think one point particularly relevant for Beth and IMHO the most important in terms of care and funding is how we are seen and treated. Acceptance of the scale and the shape of the problem.

There are many conditions where there clinical picture is one of ‘sorry there isn’t anything we can do to help, we have no treatment options’. These are usually met with at least some compassion.

There are few which become ‘we don’t really think you’re ill or deserving of support and are actively going to make you worse or at best just not accommodate your needs so you get worse when you seek help for something else’. We are largely met with disbelief, doubt, blame and gaslighting. That’s what we face from those services which we have all turned to for help.

That is a message which fits Beth’s story and that of so many of us. It may not have a clear ‘ask’ but is a point of awareness which needs raising and surely can be agreed upon by most regardless of disagreement elsewhere. And I do think we need acceptance of the problem before we can have any solution.

It could then lead into the pressing need to make the NHS safe and reduce harms. Something which itself is needed before we can even think about what sort of care and support or indeed drug trials from any research may be needed.

But I’ve yet to see the NHS or government or wider society really come to terms with this or voice that they’ve been wrong, really admit there has been a problem here. That this has been an ongoing scandal. I’m not calling for blame or an enquiry, just some recognition. And the wider awareness here could be the start of that.

They seem to think we’re just another of many groups of people with different conditions who are calling for ‘more services’. We are not. We are special but we really don’t want to be.

The first step to fixing any problem is admitting there is one.
 
hotblack said:
Something which itself is needed before we can even think about what sort of care and support or indeed drug trials from any research may be needed.
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Sadly I worry that the 'proof' we are legitimately ill will be a successful drug trial and the medical system will refuse to change at all until that happens. I really hope I'm wrong.

Even if that trial is daratumumab that is still two years away and people are desperately suffering in precarious situations now.
 
There are no other conditions that I can think of where the treatment advice that most patients are routinely given is to do something that the patient community and respectable researchers into the disease all agree is likely to seriously worsen the condition. And then when the condition inevitably worsens , patients are treated like pariahs.

The problem is that any admission of how ill we are is an admission that they have been hurting us, just by the acknowledgement of the nature of what our illness actually entails.

The other problem is that it was Blair era, politicians who funded PACE, and it is Blair era politicians and their protegees who are in power right now. So it's not just about the medical institution having been culpable. It's about the politcal wing of Labour who are currently in power being culpable.
 
V.R.T. said:
Sadly I worry that the 'proof' we are legitimately ill will be a successful drug trial and the medical system will refuse to change at all until that happens. I really hope I'm wrong.
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I can’t argue with you @V.R.T. but I want people to at least not be able to say they weren’t told or didn’t know. Publicity and awareness helps there. And it may help prepare the ground so when the breakthroughs happen change can happen quicker.
 
hotblack said:
That is a message which fits Beth’s story and that of so many of us. It may not have a clear ‘ask’ but is a point of awareness which needs raising and surely can be agreed upon by most regardless of disagreement elsewhere. And I do think we need acceptance of the problem before we can have any solution.
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Yes, I was thinking that. Maybe Beth should ask Andy Burnham to acknowledge and apologise for the institutional failures which have hindered progress and led to the neglect and mistreatment of patients. Burnham has taken on similar causes before -- most notably seeking justice for victims of the Hillsborough disaster and the Post Office Scandal. Politicians are good at apologising for things for which they are not personally responsible (although he was briefly Health Secretary in Gordon Brown's government).
 
BBC follow-up article had a response from Govt spokesperson:

www.bbc.co.uk

Beth Dobbin writes to Andy Burnham calling for increased funding into ME research

Former British sprinter Beth Dobbin calls on Prime Minister Andy Burnham to fund more research into "life-decimating" ME.
www.bbc.co.uk www.bbc.co.uk

Earlier this year, when Sir Keir Starmer was prime minister, it announced an investment of £4.75 million towards a world-first genomics study into the condition.

A Department of Health and Social Care spokesperson said: "Myalgic encephalomyelitis (ME) can have a devastating impact on people's lives, and we are determined to accelerate progress in understanding and treating this debilitating condition.

"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.

"We have published a plan, developed with the ME community, to boost research, raise awareness and support people living with the condition and we are committed to delivering on it."
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My bold.

"and a clinical trial trial for new treatments."

Are they referring to this, do you think?

Trish

Post in thread 'UK NIHR: Post-acute infection syndromes, including long COVID and ME/CFS funding for feasibility of setting up platform for testing treatments, 2025'

Looks like I missed the first page with details of how to apply:
Link
  • Opportunity status:
    Open
  • Type:
    Programme
  • Opening date:
    9 July 2025 at 1:00 pm
  • Closing date:
    2 December 2025 at 1:00 pm
  • Reference ID:
    2025/354

Ready to apply?​

Apply for this funding opportunity through our online application form
Apply now
The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID...
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V.R.T. said:
I think my concern is more that they might do something symbolic in response to Beths letter, rather than fund SequenceME, which is material and likely to have a major impact on research.



That's why I thought it would have been good to ask specifically for SequenceME funding though. Its a specific ask that can't be 'misinterpreted' as expanding the BACME project or making Michael Sharpe ME/CFS tsar or something equally awful.
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I get your point with things like Heritage and its claims
 
From Bluesky:
Long Covid Advocacy @longcovidadvoc.com

A pretty generic, non-commital response to Beth Dobbin's letter to Andy Burnham.A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed.

And this is the problem - the scale of the systemic change is so vast it's easier to ignore. It incorporates infection control, the pandemic, NHS structural change, medical education etc-the list is endless. 2/4This is the study we think they might be referring too?! It's vagus nerve stimulation for 40 people

www.isrctn.com

We also hope Beth Dobbin is looking after herself & resting. We sincerely thank her for using her platform to help others.
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