Countrygirl
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Patronising sod, made my blood boil.
Did Jen know she was being set up I wonder?
Not listened yet. I’d be very surprised if #MEaction folks hadn’t fully briefed Jen. I’m sure she relished the challenge.Yes, Dr Hammond really pushed the "well many patients do respond to GET CBT approach".
I wonder if Jen knew beforehand that he works for/ with Esther Crawely and that children with severe ME at this clinic are labeled with psychiatric conditions and families referred to child protection services.
I wonder if she also knew that the research he was referring to was probably FITNET and the SMILE trial.
I thought Jen did a great job considering and showed his knowledge to be greatly lacking, especially when she talked about the two day CEPT test etc to provide accurate measurements of what exercise/ activity is safe.
And pointed out that what he was describing ie. reducing exercise was known as PACING not GET.
Yes, Dr Hammond really pushed the "well many patients do respond to GET CBT approach".
I wonder if Jen knew beforehand that he works for/ with Esther Crawely and that children with severe ME at this clinic are labeled with psychiatric conditions and families referred to child protection services.
I wonder if she also knew that the research he was referring to was probably FITNET and the SMILE trial.
I thought Jen did a great job considering and showed his knowledge to be greatly lacking, especially when she talked about the two day CEPT test etc to provide accurate measurements of what exercise/ activity is safe.
And pointed out that what he was describing ie. reducing exercise was known as PACING not GET.
The thing is, is that without a biomarker, many patients diagnosed under the incredibly vague umbrella of ME/CFS will continue to benefit from GET. It's highly unlikely they have ME/CFS, but another disorder (POTS seems like it could be a big misdiagnosis). This makes it very difficult for Joe Public to understand the nuances of the debate. I think the nuances need to be addressed when trying to convert people too.
There's really no evidence that many patients with ME/CFS/CF or whatever definition you take benefit from GET. PACE was so inclusive that all it really studied was people with some sort of fatigue and they came up empty.
I'm quite sure that Jen is highly informed on EC, GETSET, FITNET, SMILE and who Phil Hammond is etc. Even I have a detailed knowledge about these topics and I'm just a foreign sickie in bed. The topic ME is her life, she spent years researching the history and politics and talking to pwME around the world, works with MEAction UK, prepared a letter for MPs, is informed on NICE, Unrest has a special professional impact team based in the UK - so I'm convinced that she's perfectly prepared and knows exactly what she's getting into. These topics might even be one reason that the UK gets its own impact campaign.I wonder if Jen knew beforehand that he works for/ with Esther Crawely and that children with severe ME at this clinic are labeled with psychiatric conditions and families referred to child protection services.
I wonder if she also knew that the research he was referring to was probably FITNET and the SMILE trial.
I agree. I interpreted her words like she did that but was too polite to say "well you seem to misdiagnose these kids, no wonder if you use the NICE criteria" and instead talked about "stricter diagnosis criteria in the US".The thing is, is that without a biomarker, many patients diagnosed under the incredibly vague umbrella of ME/CFS will continue to benefit from GET. It's highly unlikely they have ME/CFS, but another disorder (POTS seems like it could be a big misdiagnosis). This makes it very difficult for Joe Public to understand the nuances of the debate. I think the nuances need to be addressed when trying to convert people too.
I'm not disputing that. PACE was a mess and GET is a waste of time. My point is that because some people will inevitably benefit, when it comes to a radio programme which doesn't allow for anything like real-time correction - it can be truthful and easy to say "some of the people we see benefit from this". It doesn't mean they have the same illness as us.
I'm not disputing that. PACE was a mess and GET is a waste of time. My point is that because some people will inevitably benefit, when it comes to a radio programme which doesn't allow for anything like real-time correction - it can be truthful and easy to say "some of the people we see benefit from this". It doesn't mean they have the same illness as us.
I'm quite sure that Jen is highly informed on EC, GETSET, FITNET, SMILE and who Phil Hammond is etc. Even I have a detailed knowledge about these topics and I'm just a foreign sickie in bed. The topic ME is her life, she spent years researching the history and politics and talking to pwME around the world, works with MEAction UK..."
Me neither.What PACE and other trials seem to show is that actually no one, benefits from CBT / GET if you look at the objective criteria. Even non-ME/CFS patients do not get better. Which honestly, even I had not foreseen.
Prohibited: Discussion about number of steps, minutes of exercise, aerobic, versus non aerobic activity. No discussion about increasing physical activity (only discussion about increasing overall activity). No advice on exercises or using a strengthening programme"