NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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My rapid response to the BMJ article on the draft NICE Guideline has now been published on the BMJ website: https://www.bmj.com/content/371/bmj.m4356/rr-0

There is also a very good letter by @Andy who makes some excellent points and uses the opportunity to publicise DecodeME: https://www.bmj.com/content/371/bmj.m4356/rr-1

My letter is mostly a response to the comments made Dr Miller and Prof White. After I had submitted it, I asked if I could make a change as there is one bit that I thought could be misinterpreted, but the auto-reply says this is not permitted. In the unlikely event that it is selected for publication in the print edition, as some rapid responses are, I will ask again.

All the rapid responses to the article can be seen here:
https://www.bmj.com/content/371/bmj.m4356/rapid-responses

BMJ article in full on MEA website:
https://meassociation.org.uk/2020/1...py-and-cbt-in-draft-revision-to-cfs-guidance/
 
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These were great! Thank you so much!

Here's a quote from @Robert 1973

Furthermore, if one accepts that there is no reliable evidence that CBT or GET are effective treatments for ME/CFS, as NICE has provisionally concluded, then the evidence that they are harmful is self-evident. CBT and GET, as defined by the PACE trial manuals for therapists [13,14], are based on the unevidenced assumption that the illness is perpetuated by unhelpful beliefs and/or deconditioning. Therapists are instructed to inform patients that their illness can be reversed by their own efforts, by thinking and behaving differently. If this is not true, as must be assumed in the absence of any reliable evidence to the contrary, then these therapies are psychologically cruel. The failure of those who have developed and promoted these therapies to recognise such harm is particularly concerning given that most of them specialise in mental health.

and from @Andy

The concern that will remain is whether, or how soon, the change in the guideline will translate into the real life care that patients receive. The belief that exercise can only be beneficial is so widely accepted as a truism that it may be hard for well meaning medical practitioners to change their mindset when caring for ME/CFS patients.

So true both of them! I hope these responses will reach many readers. Thanks again!
 
Robert 1973 said:
My rapid response to the BMJ article on the draft NICE Guideline has now been published on the BMJ website: https://www.bmj.com/content/371/bmj.m4356/rr-0

There is also a very good letter by @Andy who makes some excellent points and uses the opportunity to publicise DecodeME: https://www.bmj.com/content/371/bmj.m4356/rr-1

My letter is mostly a response to the comments made Dr Miller and Prof White. After I had submitted it, I asked if I could make a change as there is one bit that I thought could be misinterpreted, but the auto-reply says this is not permitted. In the unlikely event that it is selected for publication in the print edition, as some rapid responses are, I will ask again.

All the rapid responses to the article can be seen here:
https://www.bmj.com/content/371/bmj.m4356/rapid-responses

BMJ article in full on MEA website:
https://meassociation.org.uk/2020/1...py-and-cbt-in-draft-revision-to-cfs-guidance/
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Excellent response. I really wanted someone to point out the "post-exertional fatigue" thing. White is an embarrassment, literally unaware of the most significant symptom of this disease, which he can't even name properly, let alone understand.

We are used to mediocrity in this field but it's incredibly abnormal for a professor of anything to make impertinent comments about their own topic of expertise like this. This is something that simply does not exist with genuine expertise.
 
Dolphin said:
I haven’t read this myself yet
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Great comments. Makes some good points about going forward past the guidance.

Very important to note the consequences of this paradigm, the decades of harm that have been accepted despite medicine having everything to do with its origin and maintenance, that this harm, reflected into all aspects of human culture, was the creation and ongoing practice of licensed physicians and medical institutions:
The reluctance to listen to patients feedback has cost many people their lives, millions have been missing from their lives for years. People are dying of ME/CFS, others have chosen death over a life with the condition. Many millions more have lost their quality of life for decades, unable to do basic functional activities of washing, dressing and cooking. Careers, families and friends have been lost for so many, as a result of the illness. Unfortunately, in the absence of scientific knowledge and medical testing, the patient has historically been the last person to be listened to.
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So ironic that Trish Greenhalg's "patient-led institute" explicitly excludes us, despite being the perfect example of what it can accomplish. Patient-led medicine truly is the only way forward, it is explicitly by dismissing our lived experience and instead going with the baseless opinions of a few that has caused the ongoing wanton destruction of millions of human lives.
 
Mithriel said:
Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients.
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Yes, but should ME/CFS patients be singled out as needing their thoughts being corrected any more than any other patient might need? It's not about saying ME/CFS patients should be denied CBT if their situation is similar to any other patient similarly needing it. It's about the fact there is no longer anything in the guideline - thank goodness - that ME/CFS patients are any more prone to unhelpful beliefs than those in any other patient group. Unless this guideline ends up with a lot of stuff in it about CBT, but not for other patient groups, in which case the BPS assertions will still be in this guideline implicitly. Remember that CBT is about correcting unhelpful cognitions that patients have about themselves, therefore leading to flawed behaviours. Why would ME/CFS patients be prone to that over and above other patient groups? We do not want it to be the thin end of a BPS wedge left lurking in the new guideline.
 
Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients.

Barry said:
Yes, but should ME/CFS patients be singled out as needing their thoughts being corrected any more than any other patient might need? It's not about saying ME/CFS patients should be denied CBT if their situation is similar to any other patient similarly needing it. It's about the fact there is no longer anything in the guideline - thank goodness - that ME/CFS patients are any more prone to unhelpful beliefs than those in any other patient group. Unless this guideline ends up with a lot of stuff in it about CBT, but not for other patient groups, in which case the BPS assertions will still be in this guideline implicitly. Remember that CBT is about correcting unhelpful cognitions that patients have about themselves, therefore leading to flawed behaviours. Why would ME/CFS patients be prone to that over and above other patient groups? We do not want it to be the thin end of a BPS wedge left lurking in the new guideline.
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"Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients."

CBT can be very important to some patients early on in the process of diagnosis - others more important later on when they are trying their best to adapt - for others it would be inappropriate and unhelpful to suggest that they might need such care/support - at any stage in the medical process. That is for the reviewing clinician (GP, medic, physio, psychologist, etc) to review as one issue at each meeting with the patient. If someone is not coping well then this can be a huge help.

But, CBT is not the be all and end all of emotional/psychological support - there is more than one way to skin a cat. And if a patient is distressed then they ideally would be referred to psychology (knowledgeable in ME and effects) for an opinion as to how best to support them - that needs to be a two way discussion about how that might work, how and who would they be working with. Patients need to be informed to give their consent. And it needs to be realistic given how debilitated they are and how keen they are to work on emotional material - if relevant to them at all. For example, I have assessed pwME who have PTSD form separate incidents in their life who are too debilitated to engage in trauma focused CBT but can be helped slowly in other ways. It's can be complex and needs to be assessed and individualise for each patient appropriately. Being listened to and believed is one of the biggest helpful things that any professional can do for any patient :-) Without good medical support the trauma of being disbelieved and the resulting iatrogenic trauma can be hard to help a patient move on from. Hopefully that will change with this new guideline :-)
 
Robert 1973 said:
My rapid response to the BMJ article on the draft NICE Guideline has now been published on the BMJ website: https://www.bmj.com/content/371/bmj.m4356/rr-0

There is also a very good letter by @Andy who makes some excellent points and uses the opportunity to publicise DecodeME: https://www.bmj.com/content/371/bmj.m4356/rr-1

My letter is mostly a response to the comments made Dr Miller and Prof White. After I had submitted it, I asked if I could make a change as there is one bit that I thought could be misinterpreted, but the auto-reply says this is not permitted. In the unlikely event that it is selected for publication in the print edition, as some rapid responses are, I will ask again.

All the rapid responses to the article can be seen here:
https://www.bmj.com/content/371/bmj.m4356/rapid-responses

BMJ article in full on MEA website:
https://meassociation.org.uk/2020/1...py-and-cbt-in-draft-revision-to-cfs-guidance/
Click to expand...



It used to be possible to email the RR letters editor and request that a typo, error or whatever is corrected.
 
And of course, given the BPS therapies link patients' progress to how determined they are to get better, any decline in health is deemed due to lack of determination. Win-win for the therapists, lose-lose for the patients. Especially as they then likely drop off the radar.

Hope to goodness this really is now changing.
 
We are effectively denied psychological treatment for any psychological problems we have. I have friends with MS who feel such treatment has helped them with their problems but no on ever tried to cure their MS!

It is always a risk for us to engage with psychologists.
 
Proposed British guidelines reject useless chronic fatigue syndrome treatments by Tuller and Lubet
For years, the prevailing “wisdom” about people diagnosed with chronic fatigue syndrome was they were just terribly out of shape and harbored irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two.

In the U.S., this psychological and behavioral theory of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as the illness is now often called, has steadily lost ground in favor of a biomedical one. In 2015, a landmark report from the Institute of Medicine (now the National Academy of Medicine) described ME/CFS as a “serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.” Three years ago, the Centers for Disease Control and Prevention dropped its recommendations for graded exercise therapy and cognitive behavior therapy (CBT) as treatments for ME/CFS treatments — an implicit acknowledgement that the findings from research purporting to prove their effectiveness could not be trusted.

However, graded exercise therapy and cognitive behavior therapy have remained the dominant and deeply entrenched interventions for ME/CFS in the U.K., where this approach first emerged three decades ago. The two interventions have been nearly unquestioned as the official standard of care and routinely promoted at specialized clinics around the country. The most powerful voices in the medical and academic establishments have doggedly upheld and defended them. Until now.
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https://www.statnews.com/2020/11/17...-useless-chronic-fatigue-syndrome-treatments/
 
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