V.R.T.
Senior Member (Voting Rights)
I was just about to post this. Cryotherapy and vagus nerve stuff. Doesn't bode well...
UK: Beth Dobbin -- BBC: The Olympic sprinter now bedbound for 22 hours a day
- Thread starter Beth
- Start date
Jonathan Edwards
Senior Member (Voting Rights)
It seems that NIHR are dead set on supporting the full range from rehabbabble to cryobabble.
Robert 1973
Senior Member (Voting Rights)
Thanks for all the replies. I've just sent an email to the editor of the Observer, using Chris P's figures above, calling for full finding for Sequence. It's always a long-shot to get a letter published in a newspaper -- particular as mine wasn't in response to a prominent article -- but worth a try.
I also sent one to the Times. No letters have been published in response the articles about Beth yet but I guess there may be some tomorrow or later.
Beth
Established Member (Voting Rights)
I’ve just been confused with the actually Beth dobbin and embarrassingly realised I hasn’t clarified in posting about her article I’m a different Beth, typical brain fog, the fact we share the same first name could mislead others didn’t occur to me! Even though its the some word, when it’s some one else it reads/sounds differently in my head so it’s taken me a while to clock it, apologies to any one else who wasn’t sure! Would love to comment more on everything else being discussed but can’t, but gratefully following everyone elses thoughts and ideas
Utsikt
Senior Member (Voting Rights)
The Jason study is very, very far from representative. DSQ also has a substantial false positive rate:
I do not think we have any reliable data on how many that develops ME/CFS after a covid infection. We don’t even know if it’s a risk for everyone, or if more frequent infections in general will make the ones that would likely have gotten it anyways just get it a bit sooner. That will increase the total prevalence, but by a much smaller ratio than if covid has a covid-specific added risk of ME/CFS relative to other infections.
From an advocacy standpoint the safest bet is to focus on prevalence rates that can actually be confirmed and mention that the pandemic has added to the burden.
MrMagoo
Senior Member (Voting Rights)
I think the letter has gone off now anyway
Beth Dobbins story being covered on ITVs This Morning programme just after 7am today. They've picked up on the letter signed by over 350 sports people and call for funding research.
Edit programme is Good Morning Britain not This Morning ... Brain fog!
Edit programme is Good Morning Britain not This Morning ... Brain fog!
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I thought Beth did really well, even though she had to put up with being shown a clip of Miranda Hart speaking about her illness. Beth highlighted that while some people move towards some improvement, others have been ill for more than 30 years, there is no treatment and specialist services are not run by medical professionals.
Was interviewed by Suzanna Reed, and Ed Balls (former Labour MP and husband of DHSC SOS Yvette Cooper).
8.40ish James Frith MP was also interviewed about a new cancer blood test and he was shown a clip from Beth's interview. He is Minister for health responsible for ME/CFS and also for health inequality. Said he was happy to speak to Beth. I think Beth should hold out for the PM.
Was interviewed by Suzanna Reed, and Ed Balls (former Labour MP and husband of DHSC SOS Yvette Cooper).
8.40ish James Frith MP was also interviewed about a new cancer blood test and he was shown a clip from Beth's interview. He is Minister for health responsible for ME/CFS and also for health inequality. Said he was happy to speak to Beth. I think Beth should hold out for the PM.
Robert 1973
Senior Member (Voting Rights)
Poor Beth having to deal with that sort of question when she is so unwell and relatively inexperienced as an advocate. I’m pleased if she managed to deal with it well but it’s not a question she should have been asked without forewarning IMO.
I think the best thing to do in these cases is to stick to the facts that most people who meet ME/CFS diagnostic criteria after 2 years don’t recover; that some people who recover attribute their recovery to whatever they happen to have been doing beforehand; and that NICE has concluded that there are no effective treatments and warns against GET and LP.
[Edit: added italics. I also should have added that most people with post-viral syndromes recover within 2 years. See Nightsong’s post below.]
Yvette Cooper is reported to have had ME/CFS in her twenties and recovered. She has not been particularly helpful in the past. See: https://s4me.info/threads/uk-house-...-people-and-questions.707/page-58#post-708187
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Nightsong
Senior Member (Voting Rights)
I would not give much credence to studies using DSQ metrics, and nor would I take as reliable the 20/20 report, which was sponsored & funded by a pseudoscience-peddling entity called the "Optimum Health Clinic", employees of which were involved in its production, and which contains a number of dubious statements.
Repeated difficulties with statements put out by some recoverees lead me to suspect that advocacy organisations' narrow focus on the long-term effects & documented low levels of recoveries in long-term patients could do with some tweaking. In particular it would be good if organisations putting out patient-facing materials could emphasise that for those newly affected, i.e. for most post-viral syndrome cases, recovery is not only possible but likely, and that there is no evidence for attributing some recoveries to anything other than the effluxion of time.
There is a desperate need for greater help & assistance for the most severe, & for long-term cases, but equally if the likes of Hart & Garner had been advised that most post-viral cases do recover in time, and that, if they do, they might spare a thought for those who do not - we might not have had them subsequently cause so much trouble for the patient community, and in fact might have been left with a couple of healthy advocates instead of ex-patients with strange ideas about their own recoveries.
Repeated difficulties with statements put out by some recoverees lead me to suspect that advocacy organisations' narrow focus on the long-term effects & documented low levels of recoveries in long-term patients could do with some tweaking. In particular it would be good if organisations putting out patient-facing materials could emphasise that for those newly affected, i.e. for most post-viral syndrome cases, recovery is not only possible but likely, and that there is no evidence for attributing some recoveries to anything other than the effluxion of time.
There is a desperate need for greater help & assistance for the most severe, & for long-term cases, but equally if the likes of Hart & Garner had been advised that most post-viral cases do recover in time, and that, if they do, they might spare a thought for those who do not - we might not have had them subsequently cause so much trouble for the patient community, and in fact might have been left with a couple of healthy advocates instead of ex-patients with strange ideas about their own recoveries.
Robert 1973
Senior Member (Voting Rights)
Yes, that is really important and I should have included it above. I only didn’t because I think Hart was unwell for several years before she reported that she had recovered, and recovery is much less likely after 2 years.
To me Garner and Hart are quite different cases. For all her unhelpful assertions, Hart seems to be a genuinely kind and sympathetic person, and she seems to have backtracked a bit on her previous zeal. (See Miranda Hart thread.)
I don’t want to comment on Garner’s character but to me everything he has written about the course of his illness is consistent with a typical post-viral syndrome that resolved naturally within 2 years.
MrMagoo
Senior Member (Voting Rights)
Miranda is also complicated by the query of a long onset - her account seems to be Lyme as a teen, some intermittent problems since then, leading to ME in her 40s
Yes everyone is different, but that’s an uncommon or non-standard account/ME experience
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Robert 1973
Senior Member (Voting Rights)
Coverage in The Mirror: https://www.mirror.co.uk/tv/tv-news/i-competed-team-gb-olympics-37840741
From The Mirror:
From The Mirror:
‘Ed sent his support to Beth at the end of the interview, saying: "My prediction - in fact, my conviction - is that Downing Street will be in touch with you, and they'll want to listen to you. They want to celebrate Olympians when they are winning medals, but also when they are making very, very important cases for action. So, I'm sure they'll be in touch."’
V.R.T.
Senior Member (Voting Rights)
Yes she's doing such a great thing for us but really hope she can look after herself too and pace out these interviews so the toll on her isn't too severe.
Sparkly Unicorn
Senior Member (Voting Rights)
It's a horrible responsibility to have really. You shouldn't have to be an Olympian for people to listen and it puts alot of pressure on her. Beth is severe and having to do interviews must be having a significant impact.
But it is good to see someone with her platform understand the situation so clearly unlike Miranda, who could have had a massive impact with her platform but just really wants to plug her crap book.
I only hope if she gets to Burnham and Cooper she has some really specific calls to action. My only niggle is that I would love to see more specific Ctas in the media.
But interviews with severe ME are hell and she is doing remarkably well for her experience.
Let's hope more press pick this up and Ed has a chat with Yvette when he gets home
MrMagoo
Senior Member (Voting Rights)
She’s asking for the rest of SequenceME to be funded, that’s a specific ask but it’s a big figure. I hope the attention can be capitalised on by the fundraisers as a big PR opportunity for some company, as I’m uncertain the government will pay it.
I think she’s got more chance of them agreeing to do an NHS service and my worry is they stick a GP in, over a BACME clinic, and make them accept severe = here’s a Dr in a service
I think she’s got more chance of them agreeing to do an NHS service and my worry is they stick a GP in, over a BACME clinic, and make them accept severe = here’s a Dr in a service
V.R.T.
Senior Member (Voting Rights)
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.
MrMagoo
Senior Member (Voting Rights)
There’s a difference between whether we ask for it - we should, and the likelihood of the government handing over £10mil or so
V.R.T.
Senior Member (Voting Rights)
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.