Bad science in the NICE guidelines
NICE has published treatment guidelines for CFS/ME that include clear factual errors about the Lightning Process, despite being informed of the errors in advance of publication. With the concerning wave of suspicion about science and research, these errors that leave the reputation of NICE in tatters, are more concerning than ever.
What are the errors?
It wrongly states the Lightning Process (LP) is ‘secretive- encouraging people not to talk about it with others’ and that ‘it makes people ignore their symptoms’. Both these points are completely false.
Evidence of the errors
A 2014 study asked 9 nine people, 7 of whom felt much improved from attending the LP for positive and negative experiences of the LP. NICE chose to describe the LP, as above, based on a few negative comments in the study. The lead researcher of that study, Prof Reme, has condemned NICE’s misuse of her findings.
The LP was surprised and concerned by these comments in 2014 as they were at odds with the LPs position. As a result, an audit and a CPD programme were developed to ensure the key messages of the LP would be communicated more effectively in the future.
NICE has been presented with, and ignored, the following facts about how the LP is currently delivered, that show their opinion is wrong:
- The 2021 handbook given to all LP participants specifically encourages them to share anything they want about the course and to not to push through symptoms.
- The books and research papers that detail the intervention in full and explain the pacing and ‘do not push through symptoms’ position of the LP.
- The statements to NICE from the NHS hospital trusts, researchers and LP attendees reporting that the LP is delivered as described in the handbook.
- The support from the LP for recording of LP seminars for the qualitative research element of the SMILE study.
- The LP’s insistence on the presence of parents and carers in seminars for under 16s.
- The statistically significant outcomes from the addition of the LP to Specialist Medical Care and absence of side effects in the SMILE RCT
How has this happened?
Making a conclusion based on one unconfirmed piece of information whilst ignoring all the other facts is bad science. This issue seems to have been caused by basic errors in NICE procedures:
No researchers from the field were included in the panel.
The lay members of the NICE panel were recruited from organisations with a documented history of anti-lp bias.
None of those who had recovered from this condition was included in the panel. As the LP has been used by over 25,000 people we could have introduced NICE to many who have got their health back.
This would be similar to assessing the value of a vaccine with a panel made up of anti-vaxxers, nobody who’s had been helped by the vaccine and no researchers.
What needs to be addressed?
NICE has refused to discuss these issues or address the errors. It has acted in a discriminatory way towards the LP (other approaches, such as mindfulness, which have similar levels of evidence but are not singled out as the LP has been) and used prejudiced opinions over published facts to create this guidance. It needs to be held accountable for these errors that damage clinicians’ and patients’ understanding of possible interventions for this illness and retract these errors.
If you feel this needs addressing why not ask NICE nice@nice.org to explain why they have knowingly published these errors.
Experts concerns about NICE guidelines for ME/CFS
‘We do not think that this decision was reasonable, and… was disproportionate to the evidence.’
‘The decision on LP is particularly arbitrary as (the LP) was supported by data from an RCT.’
‘Represents a bias in the reporting of findings by NICE, and it also involves a grave misrepresentation of the study findings.’
‘The committee do not seem to have sought this range of clinical expert opinion, but have relied primarily on their own personal views.’
‘At least one member of the guideline committee has publicly stated that he does not support the lightning process as a treatment, a clear conflict of interest and of concern.’
‘This (RCT) was downgraded (as a result of) the personal opinion of the committee members (who have, to our knowledge) not had the LP. Therefore, this appears to be a form of bias.’
‘This appears to be a direct and personal attack … is out of place in this guideline… We strongly ask for it to be removed on grounds of professionalism and impartiality.’
Bad science in the NICE guidelines
NICE has published treatment guidelines for CFS/ME that include clear factual errors about the Lightning Process, despite being informed of the errors in advance of publication. With the concerning wave of suspicion about science and research, these errors that leave the reputation of NICE in tatters, are more concerning than ever.
What are the errors?
It wrongly states the Lightning Process (LP) is ‘secretive- encouraging people not to talk about it with others’ and that ‘it makes people ignore their symptoms’. Both these points are completely false.
Evidence of the errors
A 2014 study asked 9 nine people, 7 of whom felt much improved from attending the LP for positive and negative experiences of the LP. NICE chose to describe the LP, as above, based on a few negative comments in the study. The lead researcher of that study, Prof Reme, has condemned NICE’s misuse of her findings.
The LP was surprised and concerned by these comments in 2014 as they were at odds with the LPs position. As a result, an audit and a CPD programme were developed to ensure the key messages of the LP would be communicated more effectively in the future.
NICE has been presented with, and ignored, the following facts about how the LP is currently delivered, that show their opinion is wrong:
- The 2021 handbook given to all LP participants specifically encourages them to share anything they want about the course and to not to push through symptoms.
- The books and research papers that detail the intervention in full and explain the pacing and ‘do not push through symptoms’ position of the LP.
- The statements to NICE from the NHS hospital trusts, researchers and LP attendees reporting that the LP is delivered as described in the handbook.
- The support from the LP for recording of LP seminars for the qualitative research element of the SMILE study.
- The LP’s insistence on the presence of parents and carers in seminars for under 16s.
- The statistically significant outcomes from the addition of the LP to Specialist Medical Care and absence of side effects in the SMILE RCT
How has this happened?
Making a conclusion based on one unconfirmed piece of information whilst ignoring all the other facts is bad science. This issue seems to have been caused by basic errors in NICE procedures:
No researchers from the field were included in the panel.
The lay members of the NICE panel were recruited from organisations with a documented history of anti-lp bias.
None of those who had recovered from this condition was included in the panel. As the LP has been used by over 25,000 people we could have introduced NICE to many who have got their health back.
This would be similar to assessing the value of a vaccine with a panel made up of anti-vaxxers, nobody who’s had been helped by the vaccine and no researchers.
What needs to be addressed?
NICE has refused to discuss these issues or address the errors. It has acted in a discriminatory way towards the LP (other approaches, such as mindfulness, which have similar levels of evidence but are not singled out as the LP has been) and used prejudiced opinions over published facts to create this guidance. It needs to be held accountable for these errors that damage clinicians’ and patients’ understanding of possible interventions for this illness and retract these errors.
If you feel this needs addressing why not ask NICE nice@nice.org to explain why they have knowingly published these errors.
Experts concerns about NICE guidelines for ME/CFS
‘We do not think that this decision was reasonable, and… was disproportionate to the evidence.’
‘The decision on LP is particularly arbitrary as (the LP) was supported by data from an RCT.’
‘Represents a bias in the reporting of findings by NICE, and it also involves a grave misrepresentation of the study findings.’
‘The committee do not seem to have sought this range of clinical expert opinion, but have relied primarily on their own personal views.’
‘At least one member of the guideline committee has publicly stated that he does not support the lightning process as a treatment, a clear conflict of interest and of concern.’
‘This (RCT) was downgraded (as a result of) the personal opinion of the committee members (who have, to our knowledge) not had the LP. Therefore, this appears to be a form of bias.’
‘This appears to be a direct and personal attack … is out of place in this guideline… We strongly ask for it to be removed on grounds of professionalism and impartiality.’
