Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

Willow said:
If this meme remains the basis of UK thinking, what hope is there?
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I think the problem goes deeper in that this is not so much a meme as a popular prejudice, worldwide, and for as long as history. The BPS model is just a fancy word for the man and woman in the street's view that PWME think they are ill but they aren't.

So the question is what hope is there if this is rooted in basic social patterns. Maybe it is a bit like shooting immigrants - it is in the fabric. We thought we had dealt with that one but it has popped up again. I am not very optimistic about the truth prevailing in our present culture. Within science wisdom is going backwards at an alarming rate because of the commercialisation of information that has taken over. But if evidence for a mechanism comes to light then things have to change, as they did for myasthenia gravis when someone tried neostigmine and then someone found some antibodies.
 
Jonathan Edwards said:
I think the problem goes deeper in that this is not so much a meme as a popular prejudice, worldwide, and for as long as history. The BPS model is just a fancy word for the man and woman in the street's view that PWME think they are ill but they aren't.

So the question is what hope is there if this is rooted in basic social patterns. Maybe it is a bit like shooting immigrants - it is in the fabric. We thought we had dealt with that one but it has popped up again. I am not very optimistic about the truth prevailing in our present culture. Within science wisdom is going backwards at an alarming rate because of the commercialisation of information that has taken over. But if evidence for a mechanism comes to light then things have to change, as they did for myasthenia gravis when someone tried neostigmine and then someone found some antibodies.
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I look for leadership from the medical profession to act with integrity. Why is it that those who have dedicated their lives working with ME patients and have seen this disease first-hand, knowing it is a physical illness, have had their voices drowned out by the likes of the BPS bunch? They have taken over and subverted this disease into something it is not. Shame on them, and shame on those who have allowed this to happen. I firmly believe that science (truthful science) will win out in the end. How long that will take, who knows. In the meantime a great injustice is being done to ME patients, as has been done for decades. What a travesty!
 
Jonathan Edwards said:
I agree that there are ethical and human rights issues here. I intend to raise this with the NICE guideline committee when I give testimony - which will be in September.
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Thank you Jo.

In my post, I spoke as an affected parent but separately, I can also speak as an educational professional as well, working with this specific disability group for nearly on 3 decades, between 1991 - 2019 which included many with ME and CFS.

We had some excellent CAHMS Consultants locally who knew their 'sheep from their goats' i.e. phobics from ME cases.\Sadly, some community paediatricians caused so may ructions.
We had a landmark conference in Suffolk in early 2000 to tease out these matters and the RCPCH staff attended and were very understanding (Gitta Saidi and Linda Haines?)

The problem for specialist medical based staff such as pediatricians and others like Physios and OTs is that they never observe the consequences of their advice, unlike the families, or the teachers (tutors at home or those in education other than at school and Pupil Referral Units). In the units, we were the kids for 6 hours or so a day. We also as part of our referral and appraisal processes (which included child protection issues), had access to their specialist medical records in personal files.

Yet NICE and RCP are shirking at using this valuable resource and expertise. I would argue that PRU and EOTAS records should be treated as primary research material quite easy and accessible to evaluate.
It's a case of health service staff, 'pulling rank' over better experience and detailed knowledge in many cases.
Multi disciplinary approaches and expertise should be the order of the day.
RCP/NICE are missing a vital trick by not getting good experienced specialist LEA officers/educators in on the debate as advisors.

Aren't the Guidelines meant for Local Authority staff after all?
 
Willow said:
I'm sorry @rvallee, I don't understand what you mean. Can you please explain? Thanks.
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It'a satirical essay: A Modest Proposal for Preventing the Children of the Poor People in Ireland from Being a Burden to Their Parents or Country, and for Making Them Beneficial to Their Public.

As a "solution" to the overpopulated poor, they could make tasty proteins. Instead of helping people who need help, just make them disappear. We don't die, but that's more of a technicality.
 
rvallee said:
It'a satirical essay: A Modest Proposal for Preventing the Children of the Poor People in Ireland from Being a Burden to Their Parents or Country, and for Making Them Beneficial to Their Public.

As a "solution" to the overpopulated poor, they could make tasty proteins. Instead of helping people who need help, just make them disappear. We don't die, but that's more of a technicality.
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Like with '1984', some read it as a warning, some read it as an instruction manual.
 
adambeyoncelowe said:
They've not for LA staff. They're for the NHS.
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Not quite. Social Workers are LA and NICE had to cover them to be compliant with 2014 Health & Social Care Act. It's my understanding from reading all the NICE background information that the NICE remit has evolved and now also has reference to others in LA like LEA staff. I drew action to this in our NICE consultation submissions. It's a particular relevance for children with ME.
 
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Suffolkres said:
Not quite. Social Workers are LA and NICE had to cover them to be compliant with 2014 Health & Social Care Act. It's my understanding from reading all the NICE background information that the NICE remit has evolved and now also has reference to others in LA like LEA staff. I drew action to this in our NICE consultation submissions. It's a particular relevance for children with ME.
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So I could be wrong here, but it doesn't look like something NICE, in general, is specifically focussed on, because the focus is all on clinical treatment/management and care. If it can be referred to in those other settings, then great. But I don't think NICE would consider it a good use of its time to develop info specifically for LAs, beyond healthcare, when it has a limited primary focus and a tight deadline to deliver this.

'Social workers' are in a grey area because it's a broad term. If they provide care, then NICE guidance probably applies. If they do other aspects of 'social work', then maybe not. For example, someone might have more of a legal background to support people in legal cases or advocacy, so they may never need to read the NICE guidelines.

I'm not sure you can generalise the NICE remit to education or other areas of local authority bureaucracy. From a NICE perspective, I doubt it makes much sense to have LEA officers or educators on the committee. It would be like having doctors sitting in on meetings to set the English curriculum.

The guideline will cover children and young people, but I don't think NICE will consider it in their remit to discuss their education, per se. Perhaps in the children and young people's focus group they could have those experiences, as that would make more sense, but I can't see it being a large part of the focus.

As I said, I may be wrong, but it seems like NICE would prefer to focus on its own particular niche, even if its materials can be used more widely.
 
adambeyoncelowe said:
So I could be wrong here, but it doesn't look like something NICE, in general, is specifically focussed on, because the focus is all on clinical treatment/management and care. If it can be referred to in those other settings, then great. But I don't think NICE would consider it a good use of its time to develop info specifically for LAs, beyond healthcare, when it has a limited primary focus and a tight deadline to deliver this.

'Social workers' are in a grey area because it's a broad term. If they provide care, then NICE guidance probably applies. If they do other aspects of 'social work', then maybe not. For example, someone might have more of a legal background to support people in legal cases or advocacy, so they may never need to read the NICE guidelines.

I'm not sure you can generalise the NICE remit to education or other areas of local authority bureaucracy. From a NICE perspective, I doubt it makes much sense to have LEA officers or educators on the committee. It would be like having doctors sitting in on meetings to set the English curriculum.

The guideline will cover children and young people, but I don't think NICE will consider it in their remit to discuss their education, per se. Perhaps in the children and young people's focus group they could have those experiences, as that would make more sense, but I can't see it being a large part of the focus.

As I said, I may be wrong, but it seems like NICE would prefer to focus on its own particular niche, even if its materials can be used more widely.
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I should add, there are carers on the committee already, and I believe that there is a guideline already for social care for children. Not having acquainted myself with those guidelines, I couldn't say if they're useful to LEAs, for instance.
 
adambeyoncelowe said:
So I could be wrong here, but it doesn't look like something NICE, in general, is specifically focussed on, because the focus is all on clinical treatment/management and care. If it can be referred to in those other settings, then great. But I don't think NICE would consider it a good use of its time to develop info specifically for LAs, beyond healthcare, when it has a limited primary focus and a tight deadline to deliver this.

'Social workers' are in a grey area because it's a broad term. If they provide care, then NICE guidance probably applies. If they do other aspects of 'social work', then maybe not. For example, someone might have more of a legal background to support people in legal cases or advocacy, so they may never need to read the NICE guidelines.

I'm not sure you can generalise the NICE remit to education or other areas of local authority bureaucracy. From a NICE perspective, I doubt it makes much sense to have LEA officers or educators on the committee. It would be like having doctors sitting in on meetings to set the English curriculum.

The guideline will cover children and young people, but I don't think NICE will consider it in their remit to discuss their education, per se. Perhaps in the children and young people's focus group they could have those experiences, as that would make more sense, but I can't see it being a large part of the focus.

As I said, I may be wrong, but it seems like NICE would prefer to focus on its own particular niche, even if its materials can be used more widely.
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Key issue is Education AND Health Care Plans.. currently in the news. Also PRU staff were/ are specialist 'trained' to deliver health specific interventions... as are lots of staff in Specialist settings. I was in service trained in early 2000, but would have balked at delivering certain invasive procedures to teenagers...! I am 're reading documents issued by NICE Jan and May 2017 and it's definitely referenced there.
 
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Adam, this is vital to counter FII. Can't stress this enough. Savey ME
knowledgeable LEA officers and specialist teachers are often the only professional allies that families have in defended against aberrant medics and Social Workers . Ask Tillly!
 
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Suffolkres said:
Adam, this is vital to counter FII. Can't stress this enough. Savey knowledgeable ME are LEA officers and specialist teachers are often the only professional allies that families have in defended against aberrant medics and Social Workers . Ask Tillly!
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We're definitely aware of FII. Don't worry about that.
 
But I am worried about it or I wouldn't be posting about it!

Just revisited the Scoping brief in case my mind was playing tricks on me!
2 issues.

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-scope

"So as to who the Guidelines are for:"

see below

but,

Then I spied this;

"Why the Guideline is needed


Line 24....complete recovery is unusual, ..........

DRAFT

23 The previous NICE guideline (CG53) made recommendations on the use of
24 cognitive behavioural therapy (CBT) and graded exercise therapy (GET)."

So, If NICE suggest recovery is 'unusual" why were they/ are they then still endorsing a treatment that claimed such levels of improvement and recovery still? (But have now been discredited?)
 

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