Petition: Opposing MEGA

[Solstice]

E]

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/

"Q. How long will this study take?
A. The project was funded May 2016 and is set to open to recruitment on 1 November 2016. We hope to publish the results in May 2022 but it will depend on how long it takes us to recruit 734 children. We have estimated that this may take 42 months."

So an average of 17 children (age 11-17) would need to be recruited each month. These will need to have been referred to the Bath Specialist Paediatric CFS/ME Service by their GP and to be eligible for this study, they need to have been assessed by a Paediatrician.

"We hope to talk to the commissioners in Scotland, Wales and Northern Ireland to try and sort a similar solution for those wanting to access FITNET-NHS in these areas.

"At the moment, if you live in either Scotland, Wales or Northern Ireland and would like your child to be considered for FITNET-NHS, please talk to your GP and paediatrician about referral to the Bath Specialist CFS/ME service. We recommend you discuss with your GP and paediatrician the process of applying for funding for your child to get treatment. We cannot guarantee that they will fund any treatment that we offer."

I feel very sorry for ME-patients who will get caught up in this. But 2022... By then I suspect we'll know so much more about ME that Crawley will just look like a retard with her Fitnet-study.

 

[Jo Best]

Just in case anyone missed it for ease of future ref. https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/

 

[Dx Revision Watch]

I wrote: These will need to have been referred to the Bath Specialist Paediatric CFS/ME Service by their GP and to be eligible for this study, they need to have been assessed by a Paediatrician.

It would be interesting to know how many children of the age required for the FITNET-NHS study (11-17) have been GP referred and subsequently assessed with CFS, ME by a paediatrician each month (or per annum) by the Bath Specialist Paediatric CFS/ME Service over the last two or three years.

 

[Wildcat]

.
When FITNET was announced, I wondered if there would be recruiting from Sussex and Kent, where Esther Crawley has become Medical Advisor to the Kent and Sussex ME/CFS Society (large established) local 'CFS' group. There is a paediatric service in Sussex. Recruitment from Sussex/Kent is not in the FITNET protocol, so it hasn't happened, but I still wonder if it might (speculation), if the numbers needed can not be recruited from the Bath paediatric service area.


The Sussex CFS Society has stated links with BACME, AFME and AYME, as well as with Esther Crawley (their Medical Advisor).
http://measussex.org.uk/
http://measussex.org.uk/about-us/medical-advisors/



The new Chair of BACME, Gabrielle Murphy, spoke at this Conference, as well as Sonia Chowdhury and Mary Jane Willow. AFME and AYME have very strong links with the Sussex CFS Society, which appears to be a bastion of psychosocial enthusiasm:

http://measussex.org.uk/hove-me-practice-research-conference-2014/

Hove ME Practice & Research Conference 2014

'On 7th October, Hove Town Hall was packed with around 150 people with ME/CFS along with carers and NHS professionals from all over the region when the Sussex & Kent ME/CFS Society working with Action for ME and Association for Young People with ME staged their ME Practice and Research conference. Caroline Lucas MP opened proceedings and Sussex consultant, Dr Keith Hine who has seen many hundreds of patients in his clinics chaired the event. An interesting presentation by Royal Free Hospital consultant physician, Dr Gabrielle Murphy covered the significant involvement of the immune system in the syndrome and how the role of the autonomic nervous system. Dr Zoe Gotts who is lead researcher at Northumbria Centre for Sleep research talked about her recently published research that looked at the relationships between sleep, behaviour, cognition and the physical symptoms of ME/CFS. AfME’s Sonya Chowdhury and AYME’s Mary-Jane Willows gave talks covering the recent UK CFS/ME Research Collaborative conference and their national charities work. Dr Mario Vergara-Williamson from the Kent & Medway CFS/ME Service attended as did representatives from the NHS Sussex-wide CFS/ME Service and the Brighton Paediatric CFS/ME Service all of which were set up with help from the Sussex & Kent charity. Questions were asked, refreshments served and music was played at this most successful event.
.
.

 

[Dx Revision Watch]

Just in case anyone missed it for ease of future ref. https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/

Thanks Jo

 

[trishrhymes]

I have just sent my letter (e-mail) to Prof Holgate. If anyone wants to read it, I've put it up as a blog post here:
http://forums.phoenixrising.me/inde...r-to-professor-holgate-re-cmrc-and-mega.2045/

 

[slysaint]

Just trying to get my head around all this info;
the timing of all of it............before the new official reanalysis of PACE (will this ever happen?)
All the stuff around MEGA keeping most ME advocates very occupied.
""We hope to talk to the commissioners in Scotland, Wales and Northern Ireland to try and sort a similar solution for those wanting to access FITNET-NHS in these areas. "
Maybe BBC Scotland would be interested in discussing this?
SMILE results stalled (from what I've read so far, I don't think they got the results they were hoping for(?))
Maybe ask BBC Bristol (Dr Phil Hammond) to interview EC again, but this time on SMILE?

EDIT: http://me-pedia.org/wiki/Esther_Crawley

 

[Jo Best]

Thanks Jo

Thank you for those links too.

 

[Wildcat]

.
.
Further to my earlier post #1325, in which I speculated about the recruitment for FITNET possibly being extended to Sussex (and Kent) -

Report on FITNET from the Brighton Argus - the Chair of the Sussex CFS Society, Colin Barton, emphasises more paediatric CFS services are needed in Sussex. Colin Barton and his Society are a BACME member, and long term supporters of NICE and the Clinics.



http://www.theargus.co.uk/news/1424...r_young_people_with_CFS_needed_across_Sussex/

Specialised services for young people with CFS needed across Sussex
A NEW study into young people with chronic fatigue syndrome highlights the need for more specialised services, the Sussex ME Society claims.

One in fifty 16-year-olds are affected by chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME), according to the study released at the beginning of the week by researchers from the University of Bristol.

Dr Esther Crawley, the senior author of the report and a medical advisor to the Sussex ME Society, said: “This is an important study because it shows that CFS/ME is much more common in teenagers than previously recognised.”

The research found that nearly three per cent of 16-year-olds have CFS lasting more than three months and that girls are almost twice as likely to have the condition as boys. Contrary to the commonly held view of CFS as a ‘middle-class’ illness, children from families experiencing adversity, such as poor housing or financial difficulties, are more likely to have the condition.


There is currently only one specialised centre for under-18’s with CFS in the county, which is based at Brighton General Hospital and takes referrals from paediatricians at the Royal Alexandra Children’s Hospital.


Chairman of the Sussex ME Society, Colin Barton, said: “In the Brighton and Hove area we are fortunate as there are a number of paediatricians with knowledge of the illness.”
Staff at the centre help young people come to terms with the condition, providing them and their parents with advice and support.

But Mr Barton said the new research proves that similar services in other parts of Sussex are "very much needed” and services for young people are particularly crucial as treatment is usually effective at a young age.
“With good management a lot of youngsters can make a full recovery, " he said. “The sooner they are diagnosed, the better chance they have.”


Dr Crawley is concerned that due to limited access to treatment, only the most severe cases are getting the help they need. She said: “As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care.”

.
.

 

[Dx Revision Watch]

Just trying to get my head around all this info;
the timing of all of it............before the new official reanalysis of PACE (will this ever happen?)
All the stuff around MEGA keeping most ME advocates very occupied.
""We hope to talk to the commissioners in Scotland, Wales and Northern Ireland to try and sort a similar solution for those wanting to access FITNET-NHS in these areas. "
Maybe BBC Scotland would be interested in discussing this?
SMILE results stalled (from what I've read so far, I don't think they got the results they were hoping for(?))
Maybe ask BBC Bristol (Dr Phil Hammond) to interview EC again, but this time on SMILE?

And...

Register your organisation as a stakeholder: Updating NICE Clinical guideline [CG53] August 2007 https://www.nice.org.uk/guidance/cg53

"Is this guideline up to date?
In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check. Register as a stakeholder to be informed about the decision."
https://t.co/uO2qjvShs5

 

[lilpink]

Wow! Impressive stuff here. The Bath clinic are so sure of the trial results before the 'research' has begun that they have made this advertisement:


I see others have already pondered an ASA complaint. EDIT: ignore me ..late to the thread. But this has been discussed elsewhere (not on PR) so I think other orgs are pondering making an ASA complaint. Someone should.

 

[Barry53]

They're already starting to stack the deck in favor of CBT/GET.

That is actually a very good point. Moreover, it is being done very publicly, and the evidence is now on record.

 

[Sidereal]

In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community.

 

[TiredSam]

The research found that nearly three per cent of 16-year-olds have CFS lasting more than three months

"Nearly three per cent" now - is it my imagination or is this number going up?

“As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care.”

How very British, let's turn ME into a class issue just to muddy the waters still further. The objection to the yuppie flu thing was that ME shouldn't be viewed as being the problem of any social stereotype, but of course EC misinterpreted the objection as being due to the wrong class being blamed so let's find another one (and their mothers) to pin this on.

Maybe EC's wonderfully curative CBT will involve getting children to accept that they only believe they are from disadvantaged backgrounds, when in fact they are really middle class.

 

[Sean]

Moreover, it is being done very publicly,

Extraordinary just how blatant they are being of late, especially Crawley. Her unbridled arrogance and reckless dishonesty fair takes my breath away. Her recent comments on the re-analysis by Matthees et al were either straight fraud or blithering incompetence. I have been watching these arse clowns in action for over a quarter century, and they have taken this shit to a whole new level recently.

Can't figure if this is a good or bad sign. Are they getting increasingly cornered and desperate, and have no other strategy left to them except to keep doubling down on the lies and smears, and hope it sticks long enough for them to reach retirement? Or do they really have so much political protection that they know they can continue acting like this with impunity?

Whichever it is, the current situation can't continue for much longer, something has to give soon.

Hoping it is the biomed researchers delivering an unambiguous explanation and biomarker test.

 

[worldbackwards]

How very British, let's turn ME into a class issue just to muddy the waters still further. The objection to the yuppie flu thing was that ME shouldn't be viewed as being the problem of any social stereotype, but of course EC misinterpreted the objection as being due to the wrong class being blamed so let's find another one (and their mothers) to pin this on.

Is it time for us to all grow ponytails and buy filofaxes after all?

 

[slysaint]

A NEW study into young people with chronic fatigue syndrome highlights the need for more specialised services, the Sussex ME Society claims.

exactly which one of her studies was this.........I've lost track. Was it one of the 'qualitative' ones where she interviewed a dozen or so children? How can anyone make such broad statements based on such small numbers quite apart from all the other problems.
Have there been any studies done elsewhere to coroborate any of her findings? ie more prevalent in areas of social deprivation, ethnic minorities. etc

 

[eafw]

Wildcat said: ↑
“As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care.”

How very British, let's turn ME into a class issue just to muddy the waters still further. The objection to the yuppie flu thing was that ME shouldn't be viewed as being the problem of any social stereotype, but of course EC misinterpreted the objection as being due to the wrong class being blamed so let's find another one (and their mothers) to pin this on.

Maybe EC's wonderfully curative CBT will involve getting children to accept that they only believe they are from disadvantaged backgrounds, when in fact they are really middle class.

.
I think it's more a case of widening the net as to what she can label "chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME)", and genuinely disadvantaged children and their parents are an easy target.

Would guess that this demographic is also more likely to have other health issues many of which will meet the vague criteria that the BPS lot use to diagnose.

So a win-win for the fatigue empire as ever increasing numbers are brought into their clinics with "chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME)"

 

[Wildcat]

.
Yes, @eafw ... its definitely about widening the net, pulling in even more tired youngsters ....
“As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care.”



@slysaint ..... Its not clear which of Crawley's studies the Brighton Argus Newspaper report refers to - The Brighton newspaper report is dated the 2nd of February 2016. the 'Chronic Fatigue Syndrome at Age 16 Years' research I've linked to below was pubished on the 1st of February 2016, with an 'early online date' of the 25th January.

List of Crawley's research - http://research-information.bristol...5-961b-db30939cfc55)/publications.html?page=0


This one?

http://research-information.bristol...rs(7ff2ca19-d8e1-436c-8291-10742438f468).html
Chronic Fatigue Syndrome at Age 16 Years
CONCLUSIONS: CFS affected 1.9% of 16-year-olds in a UK birth cohort and was positively associated with higher family adversity. Gender was a risk factor at age 16 years but not at age 13 years or in 16-year-olds without high levels of depressive symptoms.
.
.

 

[Dx Revision Watch]

"Nearly three per cent" now - is it my imagination or is this number going up?.

In April 2013, in an announcement on U of Southampton site re Holgate and the formation of the CMRC:

"...Dr Esther Crawley, Reader in Child Health in the School of Social and Community Medicine at the University of Bristol, added: “CFS or ME can leave many people either housebound or confined to their bed for months or years, causing their lives to change drastically and continued employment to become impossible. We need to join forces with charities and funders to ensure we can best address the needs of patients suffering from this often life-changing condition which affects one to two per cent of adults and teenagers in Britain.”

Incidence in children as per Crawley seems subject to Moore's Law.

Note also how Holgate uses "chronic fatigue and ME"

“For the first time the research community and funder in the UK have joined forces in this unique new collaboration to create a step change in the amount and quality of research into chronic fatigue and ME."

and note the figure of "600,000" here:

"The findings are just one of several new studies being presented today (22 April 2013) at the launch of a new UK-wide research body to advance understanding and treatment into this debilitating condition which affects over 600,000 people in the UK."

"Representatives from patient charities that support chronic fatigue and ME research will also be attending the event. These include Action for M.E, the Association of Young People with ME (AYME), the Chronic Fatigue Syndrome Research Foundation, The ME Association and ME Research UK."

How many of those orgs above contacted U of Soton in 2013 to point out they are not registered with the CC as providing support for "chronic fatigue". Or raised this with Holgate?