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

Jonathan Edwards said:
Is a full text available to anyone?
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Is it OK to post the entire Times article here? This is it. Let me know if it's not ok.

'I represented Team GB at the Olympics. Now I’m in bed 22 hours a day​

The former sprinter Beth Dobbin, 32, has written to Andy Burnham demanding more research funding for ME after her life was ripped apart by the illness'​

'When Beth Dobbin crossed the finish line in the 200 metres sprint at the 2021 Tokyo Olympics, her first thought was that she could not wait to do it all again. “I was living the dream,” she said. “In my mind, there wasn’t even any doubt that I would be competing in the Paris Olympics.”

But by the time the Paris Games came around in 2024, Dobbin had barely left the house for months. Her daily routine, previously five hours of hard sessions at the athletics track and gym, has now shrunk to consist of nearly 23 hours spent in bed, leaving only to go to the bathroom or eat meals.
Dobbin, 32, developed myalgic encephalomyelitis (ME) in 2022. It is a complex neuroimmune disease that affects multiple body systems, causing profound exhaustion. It has been “life-decimating” for the former athlete, but a lack of NHS treatment or medical research funding makes it hard for her to find hope of getting her life back.

ME typically develops after a virus, and in Dobbin’s case symptoms began after contracting Covid and glandular fever in quick succession in the winter of 2021-22. Initially, she continued competing, winning a bronze medal for Scotland at the 2022 Commonwealth Games, but her times were fractions of a second slower than usual. The symptoms, including pain and dizziness, gradually became more severe.
“My whole body was shutting down,” Dobbin said. At the end of the athletics season she “collapsed on the floor” at home and could not get up. “That was the first time I was like, ‘I think I’m going to die actually’,” she said.

The medical team at British Athletics were initially mystified, and referred Dobbin to specialists, who diagnosed her with ME. She has not been back on a start line since and formally retired early from sport in April this year. It broke her heart.

“I had been in denial,” she said. “Every day for three years, even though I was so violently unwell, I had been thinking that I would get back to it. I can’t tell you how much sacrifice it takes to become an Olympian. Everything I had worked for for two decades was snatched away. I always speak about athletics as the love of my life, because it really was. The grief I’ve had around that has been devastating.”

ME affects more than 400,000 people in the UK. Symptoms include profound fatigue that does not improve with sleep, as well as headaches, brain fog and muscle pain. Severe cases can be fatal, with patients unable to eat or drink.
There are no approved treatments for ME and no specialist NHS services for severely ill patients. ME has long been neglected by medical research, and for decades was dismissed as a psychological condition that is “in the mind”. The Times has campaigned to improve inadequate NHS care for patients with the condition.

Dobbin is now determined to use the little energy she has to fight for improved ME treatment and services. She has written to Andy Burnham, the prime minister, demanding more funding for medical research into ME, pointing out that finding treatments for the condition would significantly help to lower the welfare bill.

Throughout her illness, Dobbin has been shocked by almost non-existent NHS services. She was referred to an NHS clinic for long Covid, where there were “loads of lovely people”, including physios and therapists, who offered tips such as meditation and sleep hygiene. “But there were no doctors,” she said. “In what other illness would you be sent to a clinic with no doctors? This is a life-debilitating, life-decimating illness. I know people with ME who are tube-fed, who have to be turned. It’s disgraceful not to have anywhere to go on the NHS.”

Dobbin has tried “anything and everything” to improve her symptoms, including oxygen therapy, acupuncture and antiviral drugs. She said it “feels like a stab in the heart” every time they do not work.

Recently, she has been seeing a private ME specialist, who has prescribed antihistamines which have been effective at dampening inflammation and helping to improve her sleep.
Eight in ten ME patients are women, and Dobbin believes “medical misogyny” explains why the disease is so neglected by the medical establishment. She said the “huge stigma” around ME contributed to her not feeling comfortable sharing her diagnosis publicly until two weeks ago. “I’ve spent a lot of the past four years wishing I had a different illness, something that I would get a ‘Get well soon’ card for. I’ve probably had less than five cards in four years,” she said. “I’m not going to be getting well soon, so maybe that’s why.”

Dobbin has always been “fiercely independent”, leaving home at 18 to go to the University of Loughborough and travelling the world to compete for Team GB. But her illness means she had to move back in with her parents in Doncaster at the age of 28. “My parents are amazing, but I want to be living independently. I turned 30 at my parents’ house, what happens if I turn 40 at their house as well?” she said.

The number of people with ME has spiralled since the pandemic, because Covid-19 can trigger the illness, which has similarities with long Covid. Dobbin said Burnham’s government must fund medical research to help ME patients “get our lives back”.

Campaigners are calling on ministers to commit £15 million to allow a major new genome sequencing study called Sequence ME & Long Covid, led by the University of Edinburgh, to get off the ground. ME received only £6.6m in government funding in the past five years, compared with £79.1m for Parkinson’s and £496m for dementia.

Karen Hargrave, co-founder of charity ThereForME, said: “Beth has shown great courage in speaking out about severe ME. We urge the prime minister to meet her and commit to fair funding for ME research, starting with making up the £15 million shortfall facing the Sequence ME and Long Covid project.

“This groundbreaking genetic study offers real hope to hundreds of thousands of people with ME, who have been left without effective treatments for far too long, at huge cost to them, their families and the economy.”

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Moderation note: this post has been copied (and subsequent replies moved) to a new thread:
How research directions and patient experiences connect to the terms ME, CFS and future names


Thanks both.

Much of the article is very good and the emphasis on needing £15M for Sequence ME especially good.

The problem for me is that this is the same story we have heard for so long about "ME", the imaginary 'complex neuroimmune disease that affects multiple body systems'. Fifteen years ago I would have said "Ah, yes, OK, I don't think we have evidence that ever existed". Today I would say...

the same thing. The difference is that I have learnt that there is a real disease called ME/CFS or maybe even just CFS. Today I have been trawling through historical papers on CFS that are very much papers on ME/CFS and that I should have known about years back. They provide convincing data for neurophysiological changes that look very relevant to symptoms. The obsession with "ME" has obfuscated the research field for too long.

The crucial next step is to get interest from the medical scientific community - who rightly hold the research purse strings. Stories about ME will simply be ignored. The advocacy community is shooting itself in the foot. There will only ever be any interest when the ME folklore is abandoned. And that includes antihistamines and so on.
 
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Mij said:
We want to override the screaming cries of Paul Garner dogma to find new ways to move forward.
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Aaand there is Rachel Whitfield (Partners with Garner at COFFI and the Recovery Channel)
in the Times Comments, plugging 'Recovery' and her 'Recovery Channel', with a link to the Recovery Channel.

Rachel:
'People can and do recover from MEcfs and long Covid
Here is a collection of about 3000 stories of recovery including people who have returned to competitive sports
There are some common themes it you listen/read a few of them'
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Lou B Lou said:
I'm seeing suggestions that 'research should focus on people who have recovered', including in the Times Comments. I am sure there are reasons why that would be difficult and not such a good idea, but am too wiped now to formulate such reasons. Any ideas?
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Brain training promotion, or sometimes selling something else. Guaranteed it’s someone selling though.
 
Lou B Lou said:
Exactly. I think that too. I am seeing the 'we should do research on recovered people' popping up in various places.
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Yeah they know the zero scientific research is a stumbling block.

Common themes if you read/ listen to recovery stories are:
- got a coaching course to sell you
- wasn’t ill very long then recovered spontaneously
-actually I’m not totally recovered I still pace and only WFH selling recovery courses to sick people
 
I find it bizarre that people still sign on to do MLMs in this day and age where there’s so much info everywhere about why they're a terrible investment, but people do.

There will always be some people who do stuff that’s strongly recommended against. That’s just life.

The Choo Choo mob can amuse themselves posting on every and any mention of ME (are they in Miranda’s comments?) hoping for a crumb of attention, it’s got to be diminishing returns.
 
It seems obvious to me that you cannot study a disease by looking at cases of recovery if you have no data on those who are ill, because you cannot compare nothing with nothing.
As their view is that there is nothing, they have not recovered from anything. I don’t even understand why they insist on commenting, speaking out and raising funds.
 
Rachel Whitfield and Paul Garner are doing so much harm. They have no evidence any of their Recovery Channel people either had ME/CFS or recovered from ME/CFS. They both had symptoms for a few months after Covid and recovered. They are using their irrelevant stories to promote unevidenced brain retraining. This gaslights sick people. They should be ashamed of themselves.
 
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MrMagoo said:
Multi-Level-Marketing also known as network marketing. Famous companies include Herbalife, Amway, Lularose
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The originators of 'The Chrysalis Effect' 'Get Your Life Back From ME' commercial 'recovery' coaching, were both sellers of Mary Kay Cosmetics, a US based Multilevel Marketing Company.
One of the two, Elaine Wilkins, was the head of the entire Mary Kay UK operation.
Their MLM background fed straight into their marketing of Chrysalis Effect.
 
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I’ve just re-read the Times article and was struck by the fact that, apart from referring to the illness as ME, the criticisms that Jonathan is raising all come from what the journalist has written, not from what Beth or Karen have said.

To me, the quotes from Beth and Karen are really helpful. I empathise with Beth, and I fully support their demands for funding Sequence and for appropriate physician-led services.

The issues that Jonathan has highlighted appear to come from the Times health correspondent’s perceptions of ME, which I infer may have come from a private physician – without whom Beth may not have a diagnosis, and may not be advocating for better services and research for people with ME/CFS. So it’s tricky to say the least – not only for Beth but for all of us who struggle to know what advice to heed.

However, we should not lose sight of the positive developments that we have seen in ME/CFS research since DecodeME, and I hope that the open and frank discussions on here can help us all to improve our advocacy and decision making.

And if Beth is reading, I want to say thank you once again.
 
Robert 1973 said:
I’ve just re-read the Times article and was struck by the fact that, apart from referring to the illness as ME, the criticisms that Jonathan is raising all come from what the journalist has written, not from what Beth or Karen have said.
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Beth is no way to blame, but you know as well as I do that these articles do not appear in a vacuum. The journalist's take is entirely derived from advocacy groups' positions, both official ones and unofficial ones.

The reason I have never formally joined Forward-ME is that it was required of members that they only used "ME". Resistance to dismantling the folklore is still very strong and is impervious to any arguments I can raise. I am frequently pilloried for not joining in. I can handle that but I am not prepared to keep quiet about it.
 
I haven't commented yet on the article itself. I think Beth is doing a great job and has communicated so clearly. She's right that the clinics are full of lovely people. I do think primary care doctors and the OTs want to help but have nothing to go on, but there is also a pervading doubt that even CFS as they might call it is a real meaningful clinical entity among some.
 
Beth has been very brave in volunteering to tell her story, and careful & considered in what she has asked for specifically.

We have had considerably more favourable coverage in newspapers in the past couple of years, but none of that has penetrated the NHS hierarchy or the Royal Colleges, it seems. There are a number of politicians on our side but the advocacy groups that they take advice from waste that advantage on a multitude of follies.

The name the IOM committee proposed - SEID - was not ideal, but would have been far more acceptable to the medical profession than ME, and far more acceptable to the patient community than CFS. I have no wish to re-open old wounds but why this or some other alternative was not agreed upon when the chance arose - again, a massive failure of advocacy. We could have had a name that sounded serious and non-trivialising and acceptable to most. We could have gotten rid of "CFS" once and for all.

It is a great pity that there is, as of yet, no research team in the UK with serious academic medical expertise since the immense volumes of health-tracking data that professional athletes would gather, coupled with a carefully taken medical history, could be invaluable. We really need a serious team at somewhere like Cambridge or UCL/H or Oxford. Research into ME/CFS is too decoupled from clinical realities, and the mutual incomprehension that exists between some researchers & the medical profession is something that really needs to be overcome.

I would be cautious about allying with #ThereForME too strongly at present.

I have to say that it is very much not my experience that the NHS clinics are filled with "lovely people". Many of them are distinctly unlovely; others appear to be lovely at first, but that impression is immediately dispelled when it rapidly becomes clear that, no matter what your background, they view you through the lens of psychobehavioural ideology. The majority of patients will not notice that, of course, if it is done skilfully.

It also occurs to me that this case is almost as good a refutation as one can get from anecdote that ME/CFS is unrelated to the overtraining phenomenon, which is a favourite go-to argument of some of the BPS types. If anyone would be intimately familiar with overtraining, it would be an Olympic athlete and the doubtless highly experienced teams that surround those who compete at that level.
 
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