Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

[anniekim]

Thanks but too far. I've forwarded suggestions frm here so will see what happens
Thanks to all who responded x

Understand. I am bedridden 24/7 and can't travel. Really hope you can find someone suitable and could do a home visit.

 

[Dx Revision Watch]

Our school are trying to he as supportive as they can. I did complain about a few issues and the " quality improvement officer" got involved - she was originally a biochemist who understands things better than medics ( sad but true) so they gave not pushed the formal attendance button. I' ve had a productive meeting this morning re gradual return when able and potentially piloting virtual education ( not available in Scotland) for kids with chronic illness. It' s mainly the medical side which is frustrating and disappointing.

Here in England, when my son reached the age of 17, he had the option of transferring from the outpatient paediatric hospital consultant's care to adult outpatient care (or to be referred to the adult CFS service which is located in a different local hospital) or being signed off from the paediatric consultant and not being transferred to adult outpatient care.

He elected to be signed off from the paed consultant but not be transferred to adult services. So from that point, he ceased attending 6 monthly outpatient appointments. But by that time, his LEA home tuition had ended (we had obtained an extra year of tuition, post-16, in order for him to complete the syllabus and sit an additional GSCE that he had not been well enough to sit the previous year) so he no longer required the input from the hospital consultant and MDT in order to recommend the continued provision of LEA home tuition, which they had been required to do, annually.

This is why I asked at what age your daughter would have the option (or would be required) to transition from paediatric to adult hospital services; or will she remain in paediatrics until she is no longer in the education system?

 

[Dx Revision Watch]

The Netherlands has a similar problem. Home schooling is not allowed, except by a licensed teacher, and most schools don't want to pay for that. So it's a fight for parents with sick children.

Interesting, I was not aware that you cannot home ed in Germany and NL.

Are you not allowed to employ private tutors and enter children privately into exams?

 

[cyclamen]

I realize that this discussion was about Scotland, but in general, that depends on the country. In Germany there is actually compolsory school attendance, a legal obligation that kids have to go to school. No exeptions are made, e.g. religious groups who want to homeschool have to leave the country. Parents can get money fines, lose custody and even be sent to jail and kids can be collected by police and brought to school. That's another problem for parents of kids with ME here, if the diagnosis ME is not accepted.

Joh, are You aware of any lawyer which can be of help in a situation in wich the parents lose the medical custody for their child. Because the child is sick with ME and can not attend school? Integrative Homeschooling is not provided because ME is no reason for not attending school?

 

[Valentijn]

Are you not allowed to employ private tutors and enter children privately into exams?

Only if the tutors are licensed teachers, as far as I'm aware

 

[Dx Revision Watch]

Looks like HE is legal in Denmark, Norway and France:

https://www.hslda.org/hs/international/Denmark/default.asp

https://en.wikipedia.org/wiki/Homeschooling_international_status_and_statistics

 

[Valentijn]

https://en.wikipedia.org/wiki/Homeschooling_international_status_and_statistics

Heh, 400 children homeschooled in the entire Netherlands. They'll be mostly ill, but also some developmental disabilities and behavioral problems which local councils don't want to accommodate.

 

[Hajnalka]

Interesting, I was not aware that you cannot home ed in Germany and NL.

Are you not allowed to employ private tutors and enter children privately into exams?

If children are not chronically sick, homeschooling is without exeption forbidden in Germany, no matter how qualified the tutor would be. I have to admit that I don't really know much about rules for homeschooling chronically ill children in Germany. From what I've read you have to apply and it has to be done by "real teachers" and you have to constantly proof (every few months) to authorities that your child is still not well enough to go to school. With ME as a diagnosis that is not known and accepted I imagine that is really difficult to do.

 

[Hajnalka]

Joh, are You aware of any lawyer which can be of help in a situation in wich the parents lose the medical custody for their child. Because the child is sick with ME and can not attend school? Integrative Homeschooling is not provided because ME is no reason for not attending school?

Sorry, I'm not aware of any lawyer or any place at all where parents of and children with ME can get help in Germany. Even the Charite excludes children from diagnosis. I'd ask the 3 ME charities. There is one mother with two severely ill daughters who's quite active and said the first thing you need if your children get ME is a good lawyer. I could send you her name per PM.
Nigel Speight said in one talk that he helped a German family (he compared the case to Karina Hansen). He came to German court and convinced the judge to give custody back to the parents. I imagine that he would have worked together with a German lawyer (but don't know for sure), maybe the Tymes Trust could get you into contact.
I'm not sure if I read your message right that you're in need of a lawyer? If that's the case, I'm so sorry and wish you all the best!

 

[user9876]

Our school are trying to he as supportive as they can. I did complain about a few issues and the " quality improvement officer" got involved - she was originally a biochemist who understands things better than medics ( sad but true) so they gave not pushed the formal attendance button. I' ve had a productive meeting this morning re gradual return when able and potentially piloting virtual education ( not available in Scotland) for kids with chronic illness. It' s mainly the medical side which is frustrating and disappointing.

The Tymes trust recomment Naisi as an online education service who do online class rooms. We had an online tutor from a different company who did individual tuition on-line which also worked well. We ended up getting the CHAD team (Child health and disability) in social services to organise funding for an online tutor as it was post 16 and they can go up to around 25 in providing support.

 

[Jo Best]

Joh, are You aware of any lawyer which can be of help in a situation in wich the parents lose the medical custody for their child. Because the child is sick with ME and can not attend school? Integrative Homeschooling is not provided because ME is no reason for not attending school?

Sorry, I'm not aware of any lawyer or any place at all where parents of and children with ME can get help in Germany. Even the Charite excludes children from diagnosis. I'd ask the 3 ME charities. There is one mother with two severely ill daughters who's quite active and said the first thing you need if your children get ME is a good lawyer. I could send you her name per PM.
Nigel Speight said in one talk that he helped a German family (he compared the case to Karina Hansen). He came to German court and convinced the judge to give custody back to the parents. I imagine that he would have worked together with a German lawyer (but don't know for sure), maybe the Tymes Trust could get you into contact.
I'm not sure if I read your message right that you're in need of a lawyer? If that's the case, I'm so sorry and wish you all the best!

Below is an extract from news of the successful case in Germany.
The post for more info is here: https://www.facebook.com/groups/5804522506/permalink/10153035658862507/

Good news for a change! "Joanne", the meanwhile 15 year old girl with severe ME who had been held hostage in a German hospital for 20 months (since Nov. 2013!!!) will finally be released home tomorrow!!!

You may have heard about Joanne from Nigel Speight who told us about her horrible fate in his pre-conference dinner talk at the Invest in ME conference in 2014 (!) and you may have read about her in The Global Chronicle.

Now a wise judge gave Joanne's mother her parental rights back and the father who always cooperated with the doctors lost the respective rights.

I'm sure the judge got second thoughts when he read the lawyers' letters and Nigel Speight's letters.

https://www.facebook.com/groups/5804522506/permalink/10153035658862507/

 

[Hajnalka]

Below is an extract from news of the successful case in Germany.
The post for more info is here: https://www.facebook.com/groups/5804522506/permalink/10153035658862507/

I read that when Joanne was finally released from "activation therapy" in "hospital", it was with a diagnosis of Pervasive Refusal Syndrome instead of ME.

Edited to add: Also Joanne (tube-fed, paralyzed) had to agree to continuing "psychological treatment" to be released.

 

[Londinium]

I'm not saying you're wrong in that they could well come up with something so ridiculous, but that would play nicely into 'our' hands because everyone else in the scientific community could also see how ridiculous it is too

I hope you're right. Depends on whether the assembled invitees engage in critical thinking around 'was this trial ethical?' or are just happy to be spoon-fed a 'heroic scientist debunks woo' storyline.

 

[Esther12]

I was just looking back at the protocol and it looks like it's 'standardised medical care' vs 'standardised medical care + Lightning Process': http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/protocol1.pdf

It thought it was LP vs rehabilitation. Sorry if I misled you on that @JohntheJack

How can they have had people doing CBT/GET and LP at the same time? It will be interesting to see the details on that, and how many in the LP group also did CBT/GET.

 

[Esther12]

From protocol:

Interventions

SMC: children and their families are offered a
variety of treatment options that are recommended
in NICE guidelines [2]. Typically this is centred
around graded activity and involves a follow-up
phone call at two weeks followed by family based
rehabilitation consultations lasting one hour at
approximately six weeks, three months, and four
and a half months. The number and timing of the
sessions are agreed with the child and family and
varies depending on the needs and goals of the
child. Children who have high levels of anxiety are
offered three individual sessions of CBT every two
weeks over a six week period. Other interventions
such as graded exercise therapy (GET) [16]are
available for children and young people if needed.
The clinical team providing SMC are not informed
by the research team to which trial arm a participant
has been allocated.

SMC plus the LP: in addition to the SMC detailed
above, young people and their parents will be asked
to read the information about the LP on the website
[http://www.lightningprocess.com] or using
information sheets. If the young person is well
enough, they will be asked to read a book about the
LP, given to them from the LP team, or listen to an
audio book if preferable. Children/young people and
their parents will be asked to complete an
assessment form (which will take about ten minutes)
where they are asked to identify their goals and
describe what they learnt from reading the book.
After this they will have a telephone call with a LP
practitioner (usually approximately 20 minutes).
This is used to check that the young person and
their parents are happy about attending the
course, checks the goals identified by the young
person and is an opportunity for the young person
and their parents to ask further questions. If the
young person and their family are happy to
continue, the young person will be given a date to
attend a course.

The course is three sessions on three consecutive
days. Each session is three hours and forty-five minutes
long. Group sessions will include three to five young
people between 12 and 18 years of age who live within
the region covered by the CFS/ME service. During the
group, children and young people will receive a theory
session and a practical session. The course is free to
those participating in the trial.

1. The theory session will include taught elements
on the stress response, how the mind-body inter-
acts and how thought processes can be both help-
ful and negative. The language used by young
people will be discussed and in some cases chal-
lenged. Young people will be encouraged to think
about what they may be able to take responsibility
for and change. The taught sessions are followed
by a group discussion.

2. The practical session is used to put some of the
skills learnt into practice. Young people identify a
goal they wish to achieve (such as standing for
longer) and are then given alternative ways to
think about and prepare for this. This involves
using different cognitive (thinking) strategies
before and during the period in which achieving
the goal is attempted. Young people are also
asked to identify a goal wherein they can practise
the strategies in the afternoon or evening. This
goal will usually be short but could be an activity
that is up to 30 minutes long.

3. The LP practitioner will then arrange two follow-
up phone calls with the young person and parents
within two weeks of the course and then
approximately six to eight weeks later.

That makes it much easier, politically, for Crawley to claim that LP is useful - aside from the fact that that it's such blatant quackery. Maxwhd found this:

Teachers.

Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join.

https://web.archive.org/web/20070615014926/http://www.healinghawk.com/prospectushealing.htm

 

[Orla]

ME Association press release http://www.meassociation.org.uk/201...in-young-people-with-mecfs-19-september-2017/

 

[Esther12]

ME Association press release http://www.meassociation.org.uk/201...in-young-people-with-mecfs-19-september-2017/

They've got a very difficult job, responding to research that they haven't seen. I thought that had some good point, but this was really unhelpful [edit: probably unhelpful - didn't mean to sound so strong. I always focus on the negative!]:

“There has been a growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to its cause.

That's just lining Crawley up for an empty goal to talk about how mental processes are borne of neurology, how some patients fail to understand the way mind and body interact and so take 'offence' at the help that can be provided through mind/body interventions, etc, etc. I don't see how that comment could do any good, and can easily see how it could be bad for us. Especially when we know Phil Parker and the Lightning Process dress themselves up in neurobabble - what simplistic model of ME/CFS causation in being referred to? The LP one is a complicated mess founded on nonsense, but it's not simplistic and it tries to avoid presenting itself as psychological.

It would be great if we could get the ME Association to be more careful when talking about things like this @charles shepherd .

 

[cyclamen]

Thank You Joh and Jo Best, no it is not my case, but from a friend who doesn't understand english well enough. And until now, she doesn't want to bother the mother with the two sick children.

 

[Large Donner]

It would be great if we could get the ME Association to be more careful when talking about things like this @charles shepherd .

Na, the LP is just a big bunch of bullshit and we should all say so.

 

[Esther12]

Na, the LP is just a big bunch of bullshit and we should all say so.

I'm not remotely saying that we shouldn't slag off LP for being absurd - look at the quote about Parker stepping into peoples' bodies I posted - it's just that the way we do that still needs to be careful, or else we risk allowing Crawley to distract from the real problems with LP by talking about irrelevent mind-body stuff.