Barry
Senior Member (Voting Rights)
Yes. Definitely need to avoid knee-jerk reactions.
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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published
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Tilly
Senior Member (Voting Rights)
I also think Anbu is also part of Bath, still digging so may have more info tomorrow
Tilly
Senior Member (Voting Rights)
I think Weir was talking about being refused because he was a private doctor.
Tilly
Senior Member (Voting Rights)
I have a few people coming back to me and I may know more tomorrow. Will look our for Georgetown.
Alena Lerari
Established Member
Anbu was on my table at the scoping meeting. I am horrified that he’s on the committee. There was a big argument between him and myself plus Tony Crouch on the other side.
This is what I posted here at the time:
We had a clinical lead of one of the paediatric CFS/ME specialist services in our group. I will refer to them as they, to avoid he or she, since we are not disclosing
. When I brought up the issue of there not being aids and adaptations mentioned for the guideline, they went on to say that they hardly ever prescribe wheelchairs for children and many children come from GPs who prescribed wheelchairs while these children have (and I quote) "behavioural problems". They went on to say that it should only be specialist tertiary services that should be able to prescribe aids (or rather deny those as it happens).They also said that the Trust does not want them admitting children for inpatient stays and that everything should be dealt with on an outpatient basis. However, as they deal with these children and they are the experts, they continue to admit the kids for inpatient stays anyway.
Other quotes include "it is very different for children...these children can be ill one day and run around the next" and "most children improve with the available treatments".
I am seriously concerned about "these people's" influence.
Alena Lerari
Established Member
Not that I am a doctor but I was interviewed for the lay member position and was told that my stance on GET and CBT is a conflict of interests. I obviously did not get the job. Peter Barry was one of the people interviewing candidates.
Sasha
Senior Member (Voting Rights)
I can see where a conflict of interest might arise if someone is making a living from providing CBT and GET but not otherwise. Are you able to say anything about why you were seen as having a conflict of interest?
I am inclined to agree with that.
Sometimes just holding fire and waiting a bit is the best option.
Though we should make it clear to the powers that be that we are watching this like hawks, and will not accept sub-standard processes or outcomes.
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Jonathan Edwards
Senior Member (Voting Rights)
I think the important thing is to establish whether treatments work or not - or whether we have reliable evidence of that. If CBT and GET are not cost effective it is just because of not being effective.
Adequate care might be more expensive. It would probably involve doctors much more, who are expensive. It would continue long term rather than just being a one off treatment course. More tests might be done etc.
Without that 'standard medical care' s pretty much 'goodbye we don't need to see you again' and it would be dangerous to argue that that is to be preferred.
Andy
Retired committee member
A number of the patient body submissions made this point when responding to the draft scope, although we will have to hope that it is taken on board when those studies are assessed - NICE repeatedly made the point that all evidence, which would include PACE, will be reassessed for these guidelines.
Tilly
Senior Member (Voting Rights)
I think they are playing on the fact we will wait and see. Once the process has begun we will have no say and even if the laypeople object they will overrule as they did before. Not that we can do anything now anyhow, that time has past I feel.
Luis Nacul will be used as the balance and I would hazard a guess they are not announcing the others because they are either trying to get balance or the members/chair are refusing the ones put forward.
This is how I see it pan out:
All the main players are in the new or only CFS centres, all are psychological based. They are the only ones that know ME/CFS because they treat and have the research; that will be their argument. All other doctors are taken down including the ones who believe EDS is not a psychological behavioural condition (MUPPETS), children are already having EDS diagnosis taken from them and most parents don't know about the problem, as it is never discussed. POTS is just an anxiety so this again will be dismissed.
There are no doctors left that treat ME/CFS as an illness, or they hide so they don't get taken down. Patients asked for centres to be closed because of this problem especially with the children. This is an important point due to the fact parents need letters to give to the school so we have to play the system. We cannot make complaints, again because we get accused of FII and anyhow what Dr do you go to who will stand up for you and your child? Private diagnosis are thrown out and point the finger at FII. If you look up safeguarding on RCPCH and NICE you will see how this is being handled. Who is counting the FII accusations and which Dr or areas make the accusations. What happens to the children when they are taken? You just have to look at Kariena Hansen. Notice the Paediatric said he will still take patients for stays in hospital. How many have this treatment? Remember if children are taken mostly they are gagged by the court.
MAGENTA (among others)about to be released along with the shopping bag trial all the main players are connected to CBT and GET. If you read the comments on the scoping you can see a clear path to Functional Neurological dysfunction, as alluded to on the neurological comment on the draft scoping, this will then become the way to diagnose ME/CFS. In Ireland they are already taking diagnosis away from some that have MS patients that do not have enough lesions or epileptic type fits with no evidence of epilepsy. Celiac can cause fits and this again gets hidden. How many ME sufferers have this type of fit?
Malaise will take over PEM and become illness beliefs, which is why I hate the term. Sickness with no post exertional will be easy to convert the doctors mind and lead into integrated Mental and social health care with isolation being part of this and being promoted by the media, our children are again going to feel pressured into social situations and back to school. This is the main focus on the scoping document. There is no research they would consider that would dispute this and many people will agree this is a good thing to combat - social isolation. This gives them safe ground with full agreement from all, like they did with activity and exercise. They will not be looking at harm or an other treatment?
FII will be brought in as parents who cannot manage their children or emotionally have major issues and seek attention, this is already being played out from my personal experience. There are many radio interviews going on with the main players in the Biophysical SMC. There is a surge in research with mothers who have been accused of having FII. They will be coerce into going into/on to trials so that they can get their children back.
One of the laymembers is a 17 year old who has had ME since the age of 4. I shudder to think how strong this person will have to be defending against the Paediatric that Alena Lerari sat next to.
I have a lot more to say but need a boat load of coffee.
Moderator note: This post and several subsequent ones relating to children with ME have been copied or moved to a new thread:
NICE guidelines and the needs of children with ME
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Tilly
Senior Member (Voting Rights)
What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured.
Figures are not going to represent what actually happens if they are not truthful with the outcomes. No child has measurement of physical ability. School figures are manipulated by school, so if a child makes it to registration that is attendance, but does not reflect the reality. Therefore, if they go home an hour into school day it looks as if they are improving. This happens on the trials too, discharged from trial is recovered or on going treatment. This problem is compounded as a parent if you can manage to get your child to school regardless of the problems caused by PEM it means the attendance/safeguard officer is off your back, as it is the school that send them home. The impact on the child is... well I have no words to describe this or as a parent who has had to do this to make sure I keep hold of my child his now bedbound on good day housebound and the guilt is as you can imagine.
Andy
Retired committee member
Personally, if Jo Edwards recommends us to wait and see then, for the short term, that is what I will do.
In regard to concern about PEM being sidelined, NICE changed the wording of the scope, following comments from many patient orgs, to more explicitly focus on PEM rather than fatigue as a defining symptom, and to make it clearer that PEM is a result of over exertion, rather than just a vague "we feel worse when we do more".
ETA: Here is what is now in the final scope, which can be seen here https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope. Not quite as clear as I thought it was earlier but PEM is definitely in there.
In regard to concern about PEM being sidelined, NICE changed the wording of the scope, following comments from many patient orgs, to more explicitly focus on PEM rather than fatigue as a defining symptom, and to make it clearer that PEM is a result of over exertion, rather than just a vague "we feel worse when we do more".
ETA: Here is what is now in the final scope, which can be seen here https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope. Not quite as clear as I thought it was earlier but PEM is definitely in there.
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Jonathan Edwards
Senior Member (Voting Rights)
I am bound by a promise of confidentiality but I can assure you that this is not the case. 'They' are trying to get this right. It is a seriously difficult thing to achieve within the rules because of all sorts of Catch22s, but the people trying to set the committee up are not trying to whitewash anything.
Tilly
Senior Member (Voting Rights)
Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive. accountable and responsible people who run the centres they know what they are doing and I am mostly on the receiving end of trying to support parents and I am at the end of the line, I have nowhere to turn.
I was at Westminster the other week for a Do No Harm meeting it is about time we started to talk about the children taken into care. https://www.uclan.ac.uk/news/childrens-services-uclan-study.php Andy gave us some information.
Out of 600 cases Fiightback announced at Westminster they have lost 10 cases in the last 2 days. This is just one group fighting for children with complex needs.
https://www.bailii.org/ew/cases/EWHC/Fam/2017/518.html if you go to 1:38:22 you will hear Leigh talking about how this happens with Social Workers, remember taking into care is on the OFSTED report as safeguarding extra points and Social Workers get extra funding.
The hickman line in this court hearing https://www.bailii.org/ew/cases/EWHC/Fam/2017/518.html is a home one that cannot be tampered with, and this was later alluded to in the judges summing up. At the very bottom there is a mention to CFS. Yet the Doctor states this is not life limiting and H can live a normal life. Connective tissue POTS CFS.
This case is like many others, it is just this one has been made public for all to acknowledged the appalling manipulative mother. Me in a court case would come over the same. Remember the local authority will chose what evidence to protect the child, the mother and farther have no rights and get no financial support and because Solicitors work is mostly against parents (as they get paid) they are not keen on standing up for the parent and mostly tell the parent to self represent.
Medical history not needed and can be cherry picked. professionals cover things up, there are many reviews that show this. How many cases do we loose like this that we don't get to hear about or like another young girl thrown out by her mother because she was not as ill as she says she was because the doctor knows best. Thrown out when 15, now in her 20s with no support bedbound not able to eat unless her kind and caring GP comes to visit. How many Doctors hide the truth.
All individual cases get lost, you put them together you get a picture of the reality, but this has been going on for decades and the numbers of ME are increasing. Sorry to go on but it would seem that no one understands or listens to the enormity or scale of the problem because no one talks about this issue, and we need to.
Sasha
Senior Member (Voting Rights)
According to NICE's website, they "are accountable to our sponsor department, the Department of Health and Social Care, but operationally we are independent of government."
Are you saying that you think the DHSC is influencing who is appointed to the committee?
I suspect that someone seen as a clinical expert working in the area is not seen by NICE as having a conflict of interest otherwise NICE would never get any experienced clinicians.
But I think instead its a case of arguing that these people have an existing prejudice that is likely to impact on their decision making process.
Sasha
Senior Member (Voting Rights)
Thanks for saying this. I understand that confidentiality makes things difficult but when NICE announces an initial selection loaded with BPS apologists, patients need reassurance that the committee isn't being fixed.
Like @Andy, I'm content to take your advice to wait and see because I know that you have inside information that we don't and I trust your judgement, which is based on years of being involved in the world that these committees operate in.
@Brian Hughes @Tom Kindlon
this is reality.
Whilst I do welcome Keith Geraghty's venture in paediatrics, I have significant concerns re the recording of recovery and the actual diagnosis ( as it is currently a dustbin diagnosis -one can see this from much paediatric research), to have confidence in the robustness of figures that can be derived.
Parents struggle to have POTS assessed yet anxiety is a common buzzword
School attendance is a bad joke (( and research has self reported outcomes for this(!))
Many kids have PTSD from their medical encounters
I have a feeling that NICE will not sacrifice CBT as IAPT is so dependent upon it