Please note: As with all posts on my 50shadesofsun.com blog, all opinions are mine. Usually, I leave that unsaid but on this occasion I want it clearly understood that I am speaking for myself – not for any Facebook group nor anyone else.
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How dare the Barts MS blog criticise the journalistic integrity of the BBC Panorama team or any other news team, for that matter, over how they treated the HSCT treatment at Sheffield?
And then to ask, albeit with tongue firmly in cheek, “Should we create the equivalent of the Ig-Nobel prize for irresponsible journalism?” is downright insulting.
Just what do the writers of the Bart blog post ClinicSpeak: reflections on HSCT after the fallout of the BBC Panorama programme know about journalism? Not a lot in my opinion – as someone who is a journalist by profession.
As far as the other points made in the blog are concerned, I must point out that I have absolutely no medical training – but I do have MS, epilepsy and a cardiac condition.
There does not seem to be anything new in the blog; they have said it all before and the fact that Panorama did not go into the downsides of HSCT is irrelevant. It was not scientific paper, nor was it a programme about the pros and cons of the process – it was a news story about the treatment and progress of four patients who had chosen to have it. And that is what journalism is all about. It told the story in an accurate and responsible manner – it is just that those at Barts would have preferred a different story altogether.
What’s more, if they want to compare HSCT with drugs, that discussion needs to include the dangers of those drugs too, of which there are plenty.
As someone who lives with MS, I think the Barts blog piece, posted on February 8, was highly patronising in that the writers seem to assume that patients aren’t interested in the long term risks, just the immediate ones. I have not had HCST, nor applied for it, but I think that if it works for some, then it is good. There are risks but these, both short and long-term, are discussed with each patient before he or she is accepted for treatment.
As far as the benefits are concerned, the people at Barts are also patronising if they think patients with extensive MS damage expect it to be reversed by HSCT, rather than progression halted with no other gains. Stopping the progression is good enough. Those extra gains are really only achieved with early MS – and patients know that!
And, while I am about it, what is it with neurologists’ attitudes? They seem to think that they should have the right to decide what is best for every individual. They think, and I am aware that this is a sweeping generalisation, that they know best and pay little if any attention to the views of patients themselves. They are the professionals and don’t need to considering patients’ views about their own treatment – well, that is exactly what they should do.
We are more than MS statistics, we are more than patients. We are PEOPLE, with our own views and opinions – and our own rights – about what happens to us.
Gwen Higgs – an update
In a comment received after my blog on Monday, one reader asked if there would be a part 3 about what Gwen’s neurologist thought about the HSCT she’d had in Moscow. So, I asked Gwen.
She said: “That would be an extremely short blog entry. I have only seen my neuro once since I came back from Russia eighteen months ago. That was a routine appointment which happened to fall a couple of months after I arrived home, so I was still bald. She showed absolutely no interest whatsoever.”
50shadesofsun 
When I looked into HSCT and the side effects, I can truly say I was more frightened by the long term use & side effects of the DMD candy the neuro’s hand out (if you are RRMS or the neuro doesn’t classify you so he can continue to offer DMDs!) than the side effects of HSCT. Or you get someone who just googles HSCT and gets the cancer stat’s which are NOT relevant to HSCT for auto immune..
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Oh, they know not of what they speak! To stop the progression is paramount to taming this beast and that is what HSCT does. Bart’s blog on Tysabri clinics illustrated the consequences we suffer because of the manipulations of big pharma. Even he did not acknowledge the importance of halting progression. June 22 will find me in Pueblo, Mexico! Thank you George Goss!
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The Barts blog is an opinion, just like your post is an opinion. Their view comes from a medical perspective and I have to agree that from a title like Can you stop my multiple sclerosis? they should have talked more about the risks of undergoing something that is still called an experimental treatment and is still in the trial phase in the UK.
Fair enough the programme was following the stories of those four patients who’d undergone treatment. But then I feel like the title of the programme gave the wrong angle of what was going to be presented perhaps?
Some people (some who have been newly diagnosed or family and friends of someone with MS) might think it is the cure. The programme didn’t really focus on the aggressiveness of the chemotherapy and how serious a medical treatment it is – it showed people who had seen improvement- a man who needed 24 hour acute care that could ride a bike at the end of the programme, for example.
This article titled “Long-term outcomes of autologous hematopoietic stem cell transplantation with reduced-intensity conditioning in multiple sclerosis: physician’s and patient’s perspectives.” : http://www.ncbi.nlm.nih.gov/pubmed/25711670
says “The consistency of our long-term clinical and quality of life results, together with the persistence of improvement, is in favor of the efficacy and safety of this treatment approach in MS patients.”
But it is over the long term results.
However, before you jump down my throat, I think the fact that the treatment can achieve improvements in quality of life for people with MS is something wonderful and should be explored further. I felt emotional watching the programme, I thought it gave hope and was really inspiring.
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The fact remains that the Barts Blog was wrong to use the term ‘irresponsible journalism’ when, in fact, the opposite was true. Panorama did not set out to make a medical programme showing all the benefits and risks and Sheffield’s work was called a ‘trial’. The story was about four patients who were examples of people having good results in the short-term – as long-term results cannot be assessed yet. Certainly, I would hope to see a follow-up, when sufficient time has elapsed, to show long-term results with the same four patients. The results, so far, are encouraging and I agree with you that this treatment should be explored further.
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