BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

Cinders66 said:
The newsbeat program on this 12:45 wasn't so hot. One case study on there called it CF, suggested that there's hope if you really want to get better and it doesn't last for ever etc. And there was talk of getting people up and about and used to being mobile again ( sounds so easy) with GET and Michael Sharpe popped by saying it was all we have (and whys that?!). No recognition of energy production issues or of ME as life long condition. We aren't breakIng through like this. I personally wouldn't bother arguing against GET in the current U.K. media formats on offer as it doesn't work, unless you have time to quote workwell foundation research, IOM SEID name etc, it's just they say yes to rehab, they say no and even then it can sound like we either need pacing or rehab whereas we actually need medical treatment. I personally would have gone big on research funding in the media this awareness week but I suspect t MEA & AFME are tied in with the CMRC on this and are waiting to see if the "respectable channels " route comes to anything now CMRC have moved, rather than promoting patient lobbying, which is why they never mention it in a direct challenge to the establishment way.
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Interesting that Sharpe, who has been insisting on Twitter that he researches CFS and sees that as different from ME, is interviewed as an expert on ME claiming that GET is effective for ME.
 
JohnTheJack said:
Interesting that Sharpe, who has been insisting on Twitter that he researches CFS and sees that as different from ME, is interviewed as an expert on ME claiming that GET is effective for ME.
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Its not interesting, its to be expected, he is willing to lie, throw anyone under the bus, do anything he has to to defend himself. From doublethink, contradictory statements, admissions he promptly "forgets" and so on to get through a particular situation then change his story to get through the next one. All to get his reality denying agenda cemented as the truth...

Protecting a house of cards is quite a challenge, and what he was doing was working great till now. He is surely very frustrated that winning strategies are not working as well today, his grip on the narrative is falling apart and from his perspective he is being unfairly persecuted.
 
Bill said:
I disagree. She was explaining that she suffers from exhaustion and chronic fatigue in the context of having ME.

I can't imagine a person with cancer getting criticized on a cancer support forum for saying that she was overcome with exhaustion and fatigue in a radio interview.

I don't find this sort militancy is kind towards those suffering from a terrible illness.

Bill
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Bill I'm far more sick than Lizzie who clearly is better & expects to recover. I commented in a detached not nasty critical commentary way on a forum (about how I felt some of what she said wasn't optimally useful for the community) , where I doubt she frequents. I haven't attacked her personally. I gave her fair do as to why she perhaps spoke in certain ways. It's curtailing free views & speech if that's not allowed AFAIC.
 
Cinders66 said:
Bill I'm far more sick than Lizzie who clearly is better & expects to recover. I commented in a detached not nasty critical commentary way on a forum (about how I felt some of what she said wasn't optimally useful for the community) , where I doubt she frequents. I haven't attacked her personally. I gave her fair do as to why she perhaps spoke in certain ways. It's curtailing free views & speech if that's not allowed AFAIC.
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We have no way of ascertaining whether Lizzie reads the forum (or not). Being more (or less) well than another with ME/CFS isn't a license to be critical of them and I never called you out in particular (and I'm not doing so now).

Lizzie did not call our illness "chronic fatigue," but said in the context of having ME/CFS that she experiences exhaustion and chronic fatigue. Nothing remarkable there.

Trust me, I'm feeling my free speech is being chilled.

People like Lizzie are entitled to more kindness IMO.

If you are reading this Lizzie, I'm sorry you had to face this.

Bii
 
Bill said:
We have no way of ascertaining whether Lizzie reads the forum (or not). Being more (or less) well than another with ME/CFS isn't a license to be critical of them and I never called you out in particular (and I'm not doing so now).

Lizzie did not call our illness "chronic fatigue," but said in the context of having ME/CFS that she experiences exhaustion and chronic fatigue. Nothing remarkable there.

Trust me, I'm feeling my free speech is being chilled.

People like Lizzie are entitled to more kindness IMO.

If you are reading this Lizzie, I'm sorry you had to face this.

Bii
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Let's hope the 22 year old can handle views on a forum and isn't too traumatised by a slightly critical comment. she said she went to a clinic which specialises in treatment of CF, not that she had CF as part of ME. I didn't feel I was being unkind. The name being reduced to CF is very common and had been a continual issue as we struggle to get recognition for multi system disease.
 
Cinders66 said:
Let's hope the 22 year old can handle views on a forum and isn't too traumatised by a slightly critical comment. she said she went to a clinic which specialises in treatment of CF, not that she had CF as part of ME. I didn't feel I was being unkind. The name being reduced to CF is very common and had been a continual issue as we struggle to get recognition for multi system disease.
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Let's agree to disagree. Lizzie called her illness ME. She said she experiences exhaustion and chronic fatigue. She did not engage in reductionism in my estimation.

It is not unusual that people with ME/CFS to experience exhaustion or chronic fatigue.

My heart goes out to her.

Bill
 
andypants said:
Why is it never mentioned that maybe we are looking at two different groups of patients?

Oxford applies to 1-2% of the population, while CCC applies to 0.1-0.2%. Even if we consider clueless physicians who don’t use the criteria correctly, and even if these criteria are not perfect, it should be obvious that data from the 10% ME/CFS-sufferers would get lost when studied together with the 90% CF-patients. It sucks for the people who are struggling with CF too that there’s so much fighting, they could probably do with better targeted research too. That divorce is long overdue.
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In my humble opinion, any sub group without either PEM or severe brain fog is not a subgroup of M.E., it is a different disease.
2. Generally feeling tired for a long period of time is not the definition of any particular disease, it is a symptom of almost any chronic malady. It’s meaningless, but it’s also a way to create a large target for the bullsh tter industry.
 
andypants said:
Why is it never mentioned that maybe we are looking at two different groups of patients?

Oxford applies to 1-2% of the population, while CCC applies to 0.1-0.2%. Even if we consider clueless physicians who don’t use the criteria correctly, and even if these criteria are not perfect, it should be obvious that data from the 10% ME/CFS-sufferers would get lost when studied together with the 90% CF-patients. It sucks for the people who are struggling with CF too that there’s so much fighting, they could probably do with better targeted research too. That divorce is long overdue.
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I'm a bit late to the party, but I just wanted to point out that another danger in basing criticisms of PACE on the overly loose selection criteria is that it implies we believe there are at least two different illnesses: "real" ME and "all other fatigue", and it also implies that the second group may actually respond to CBT and GET.

Any person sick enough to qualify for the PACE trial is pretty sick. I don't want to see any of them subjected to this nonsense, CCC or not.

It might turn out that there's no genuine underlying dichotomy between those that meet CCC and those that meet broader criteria. They could lie on a continuum with CCC criteria picking out the more severe cases.
 
Some leading ME researchers and clinicians say the treatment is safe and effective. They also say that if you don't have the treatment you'll never-the-less reach the same level of improvement as those who did receive it if you just wait one year's time.

Meanwhile, there is considerable anecdotal evidence that excessive exertion can result in long-term worsening of the condition. There is currently no way to determine which patients are vulnerable to this kind of harmful response.

Short-term worsening of symptoms (PEM) following exertion is a required symptom under the CCC (2005), the ICC (2011), and the IOM's SEID definition (2015), so the concept that excessive exercise could lead to a long-term worsening of the condition is not without foundation.

Knowing all that, what would be the prudent course to take when comparing the risks of a program of increasing exertion with the alternative of simply waiting a year to achieve the same results?
 
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Amw66 said:
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It isn't incorrect to to say that Prof Sharpe, or whoever made that statement, are leading in the regard that they've built their careers out of their research and they've been very influential. It's far from optimal that they're described that way, but I don't think it's something worth criticizing Newsbeat too much for, especially when they've actually been really helpful in regards to ME.

They also describe Dr Charles Shepherd as a leading expert, in their defence.
 
petrichor said:
It isn't incorrect to to say that Prof Sharpe, or whoever made that statement, are leading in the regard that they've built their careers out of their research and they've been very influential. It's far from optimal that they're described that way, but I don't think it's something worth criticizing Newsbeat too much for, especially when they've actually been really helpful in regards to ME.

They also describe Dr Charles Shepherd as a leading expert, in their defence.
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I think we as a community have been treated so poorly that we just seem to be happy with whatever coverage comes.

I hate to be a negative Nancy but I really feel like the coverage could and should have been so much better. ME/CFS isn't some completely uknown entity anymore. There have been countless well written and enlightening articles about ME/CFS and the entire history of CBT and GET (The Nature and Buzzfeed article are great examples). ME/CFS is an extremely complicated somatic illness, yet Sharpe is a professor of psychological medicine and has conducted some extremely abysmal studies on the illness that shows he has no understanding about ME/CFS at all. How can he be considered an expert?

Are homeopaths and acupuncturists ME/CFS experts because they ''try'' to treat patients?

I think not.

It's 2018, we need and deserve better.
 
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Not sure which thread is most appropriate for this, but the 'leading experts' letter was released: http://tillymoments.blogspot.co.uk/2018/05/bbc-should-check-their-information.html

CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition.There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.

NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.

Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them. " Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Esther Crawley, Professor of Child Health, University of Bristol Prof Paul McCrone Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London."
We hope this explains our approach.
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Chalder, Crawley, McCrone, Sharpe & Wessely, claiming there is "good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients". Wonder what specific studies they're referring to?

There are some problems with the letter of complaint that the BBC was responding to (eg the GMC did not fund PACE).
 
Esther12 said:
Chalder, Crawley, McCrone, Sharpe & Wessely, claiming there is "good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients". Wonder what specific studies they're referring to?
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Its clear that they are still lobbying for their work. What they don't say is that they are the people responsible for the poor methodologies that are being attacked and hence have a vested interest.

Also because there are no other treatments isn't an excuse for using a bad treatment.
 
The letter from the 'leading experts' implies that the CBT used for ME patients is the same as is used for cancer and MS this is not true. How can they still be getting away with this. As we all know one type is to help cope with a debilitating illness and the other is to get rid of 'false illness beliefs'.

Even if there are faults with the latter to the BBC I think it is really good. Really greatful they wrote it.
 
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