Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

[user9876]

Thanks @user9876 , having barely scraped a C at my Maths O level, the statistical methods go way above my head. I can understand ranges, but I confess I don't understand your terms. Would it be possible to explain mean difference method and linear scales? Apologies for my ignorance.

A standard way to look at results for trials is to take the average improvement for a group. So look at the average score at the start and the average score at the end for each group. Then look at the difference. There needs to be a significance test between the results for the different groups to test whether the difference is likely to have been just due to random effects or whether it is likely to be due to the intervention.

My issue with the scales comes from looking at the questions. Say you have a person who scores 0 on the SF36 scale at the start and improved by 1 question then they are likely to have started by saying they were limited a lot by "bathing or dressing themselves" and changed that to limited a little. But someone who scores around the mid point of the scale may change from finding it easier "to walk a block" or finding "it easier to walk up a flight of stairs". Someone near the top of the scale may find it easier to do "Vigourous activities such as running, lifting heavy objects or participating in strenuous sport"

So the first question is does change in a single question such as changing from being limited a lot in bathing and dressing to being limited a little represent the same change in physical ability as say being limited a little in walking a block to not being limited at all. Or being limited a little in vigorous exercise to not being limited at all. If these are not equal changes in physical function this means that a change in the score for one person is not the same as a change in the score for a different person and they are not compatible.

The second question is are some people likely to improve on two questions with the same amount of improvement on physical function so is someone likely to say find is easier to walk up a flight of stairs at the same time as finding it easier to walk a block. In this case improvements are likely to be exaggerated around the middle of the scale but it may also depend on the answers given. Again this makes it hard to compare scores.

If the changes are big then this won't matter but with smaller changes the start point (in terms of questions answered) may have an unknown impact on the level of change.

 

[MEMum]

Better to try and somehow get them to stop looking to AYME for guidance and instead go to Tymes Trust
http://www.tymestrust.org/

https://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy

@MEMum any ideas how?

Not really!
I was fortunate that my daughter was 16 and starting 6th form, when she first became ill, and thus not under 'compulsory schooling' at that time (2010)
I guess a group of us could try and write a PR article on why we oppose Crawley's FITNET trial. This would summarise the various posts people have written, with ref to evidence and be easier to read for a Newbie than following our forums.
It would also be free of repetition and rants. (I have no opposition to rants and PR gives us a great chance to 'offload' in this way when necessary.)
Not sure how we could do this most effectively. Any ideas?

 

[slysaint]

Not really!
I was fortunate that my daughter was 16 and starting 6th form, when she first became ill, and thus not under 'compulsory schooling' at that time (2010)
I guess a group of us could try and write a PR article on why we oppose Crawley's FITNET trial. This would summarise the various posts people have written, with ref to evidence and be easier to read for a Newbie than following our forums.
It would also be free of repetition and rants. (I have no opposition to rants and PR gives us a great chance to 'offload' in this way when necessary.)
Not sure how we could do this most effectively. Any ideas?

I'm just wondering if the childrens fatigue clinics direct their patients/parents to AYME? (highly probable) and how they can be made aware of the non-BPS promoting alternative (TT).

 

[Snowdrop]

I'm just wondering if the childrens fatigue clinics direct their patients/parents to AYME? (highly probable) and how they can be made aware of the non-BPS promoting alternative (TT).

That would be a good thing to happen. If I have any great brain waves I'll share (not so likely). Meanwhile I suspect that the application of money is likely to help somehow.

 

[Dolphin]

It is a bit unclear, but the FITNET trial may not be using the NICE guidelines correctly. The NICE guidelines require postexertional malaise and/or postexertional fatigue:

These are the NICE guidelines

Extract from the FITNET protocol:

 

[UKmum]

Better to try and somehow get them to stop looking to AYME for guidance and instead go to Tymes Trust
http://www.tymestrust.org/

https://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy

@MEMum @2kidswithME any ideas how?

AYME is signposted as a resource by the paediatric consultants in NHS not just the fatigue clinics. Don't worry the Tymes Trust is well known by the AYME members and well thought of. I have to say the actual staff at AYME are very helpful to a lot of members who call them in need of help with fending off schools and other professionals, social services etc... who don't understand ME/CFS

 

[TiredSam]

It is a bit unclear, but the FITNET trial may not be using the NICE guidelines correctly. The NICE guidelines require postexertional malaise and/or postexertional fatigue:

Well FITNET has to water down the NICE guidelines to minimise the danger of too many real ME sufferers with PEM ending up on the trial, because those buggers keep complaining about GET and refusing to get better. In fact if EC didn't have the option of saying they can't have ME for that long so they must have PRS it could even affect the results, and we can't have that because they've already been decided and trumpeted all over the BBC and the Guardian.

 

[Countrygirl]

A good analysis of PACE with FITNET making an appearance at the end.

 

[user9876]

AYME is signposted as a resource by the paediatric consultants in NHS not just the fatigue clinics. Don't worry the Tymes Trust is well known by the AYME members and well thought of. I have to say the actual staff at AYME are very helpful to a lot of members who call them in need of help with fending off schools and other professionals, social services etc... who don't understand ME/CFS

When we asked for help at first they made big promises but when we said Crawley was my child's doctor we had a phone call back saying they couldn't do anything and try Citizens Advice. So in the end their staff were very unhelpful even though they could of helped. Then we found the tymes trust who did help.

 

[slysaint]

Tymes Trust is well known by the AYME members and well thought of

Don't get this; how can you support AYME (and Crawley by default) when you know (from Tymes Trust) that what they are promoting/perpetuating is wrong? (no matter how pleasant the staff are).

 

[UKmum]

Don't get this; how can you support AYME (and Crawley by default) when you know (from Tymes Trust) that what they are promoting/perpetuating is wrong? (no matter how pleasant the staff are).

It is something I have been asking myself lately as I have been recently learning more about the wider issues from this site. It has however been a bit of a lifeline to me over the past 18 months in that it has given me contact with parents in similar circumstances that have become like an extended family. I am aware that some people have withdrawn support recently but I like to think I am sharing some of the knowledge I am learning inside the membership forums and am making people aware of wider research and thinking. I am half expecting to be blocked at some point but it hasn't happened yet. My last post was about Complete Bollxxxx Therapy and we have had discussion on PACE and MAGENTA.
I was really sorry to hear that they weren't helpful in cases where EC is the cause of the parents problem and I am reconsidering my stance on hearing that as it so hypocritical.

 

[Wildcat]

.

With charities such as AYME and AFME ... they provide Services which their members want (Forums to make contact and friends, Benefits Advice) .... its their Policies which cause so many problems.

But AFME and AYME's Policies cause problems for all PWME and parents of sick youngsters, not just for their members.

I can well see that youngsters who are members of AYME do not want to lose the Forums where they have made friends and vital social exchanges and support.

Its dire that those charities's Policies sell their members down the river (most members and clearly most parents remain oblivious of that), and perpetually sabotage the entire ME community.

So loyalty to AYME can rest as much on AYME members not wanting to lose the Services.
Though once a member, its possible that youngsters and their parents simply buy into AYME sweetalk and don't come into contact with evidence which contradicts AYME's rhetoric, or if they do, may simply dismiss it.



AYME 2015 Annual Report and Accounts:
http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20151231_E_C.pdf

AYME Pages on the Charity Commission Website:
http://apps.charitycommission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0


AYME Income financial year ending 31 Dec 2015 .... £193,115
In previous years AYME's annual income exceeded £200,000
(Details of AYME's previous Yearly Accounts are at the end of the Annual Reports which can be found on the link to the AYME pages on the Charity Commission website link above.)

~~~~~~~~



Tymes Trust Income May 2014 to May 2015 - £12,336

http://apps.charitycommission.gov.u...teredCharityNumber=1080985&SubsidiaryNumber=0

.
If only the Tymes Trust had the same level of Funding as AYME!! Think what the Tymes Trust could do.

.

.

 

[anniekim]

A standard way to look at results for trials is to take the average improvement for a group. So look at the average score at the start and the average score at the end for each group. Then look at the difference. There needs to be a significance test between the results for the different groups to test whether the difference is likely to have been just due to random effects or whether it is likely to be due to the intervention.

My issue with the scales comes from looking at the questions. Say you have a person who scores 0 on the SF36 scale at the start and improved by 1 question then they are likely to have started by saying they were limited a lot by "bathing or dressing themselves" and changed that to limited a little. But someone who scores around the mid point of the scale may change from finding it easier "to walk a block" or finding "it easier to walk up a flight of stairs". Someone near the top of the scale may find it easier to do "Vigourous activities such as running, lifting heavy objects or participating in strenuous sport"

So the first question is does change in a single question such as changing from being limited a lot in bathing and dressing to being limited a little represent the same change in physical ability as say being limited a little in walking a block to not being limited at all. Or being limited a little in vigorous exercise to not being limited at all. If these are not equal changes in physical function this means that a change in the score for one person is not the same as a change in the score for a different person and they are not compatible.

The second question is are some people likely to improve on two questions with the same amount of improvement on physical function so is someone likely to say find is easier to walk up a flight of stairs at the same time as finding it easier to walk a block. In this case improvements are likely to be exaggerated around the middle of the scale but it may also depend on the answers given. Again this makes it hard to compare scores.

If the changes are big then this won't matter but with smaller changes the start point (in terms of questions answered) may have an unknown impact on the level of change.

Thanks @user9876 for explaining it so clearly, so helpful, much appreciated.

 

[slysaint]

More on AYME
"AYME Grads
AYME Graduates is for young people who are over 26 and are no longer eligible for membership of AYME, but who still have ME/CFS and still benefit from the type of support AYME offers.
Set up in 2003 by three members who had just reached 26, the group has gone from strength to strength. As well as aiming to support those members who are too old for AYME, the Graduates also aim to keep members involved with AYME and to work as a group for the benefit of AYME.

Members of AYME who are 24 years or older are eligible to join the group as well as past members over the age of 26 and other people of a similar age interested in getting support and being involved with AYME.
Members receive a newsletter which includes:

• articles covering their experiences of things such as residential treatment, anxiety and panic attacks, working with and studying with ME/CFS and using a wheelchair, CBT, independent living
• member profiles, favourite quotes, poems, inspiring song lyrics
• other features including a regular 'laughter therapy' column

Members can get to know other members through the members message board and contact services that AYME grads offers. "
and

Strategy for 2014-2017
http://www.ayme.org.uk/documents/10228/11022/Chief Executive Officer Annual Review 2014.pdf/2db66d23-3b2f-49a9-b865-1f71f97ffe65
"
AYME’s fundraising culture leans on important long-term relationships":
£52,037 JCT600
£32,000 Rank Foundation
£32,780 Children in need

"
Phil Hammond GP: using his position and as a comic to raise awareness of the condition on local
radio. Raised awareness and funds during his roadshow through sale of t-shirts"

 

[medfeb]

It is a bit unclear, but the FITNET trial may not be using the NICE guidelines correctly. The NICE guidelines require postexertional malaise and/or postexertional fatigue:

Is it clear how NICE guidance for CFS defines and operationalizes PEM?

The optional symptoms list includes "physical or mental exertion makes symptoms worse." But that exacerbation of all symptoms following exertion is part of the full definition of PEM by sources like the CCC, the ICC and the IOM, suggesting that NICE might be targeting a different symptom but calling it PEM. Even if FITNET used NICE as specified above, its not clear to me that the investigators would be properly selecting patients with ME.

 

[slysaint]

Well FITNET has to water down the NICE guidelines to minimise the danger of too many real ME sufferers with PEM ending up on the trial

It would be interesting to see the data of the 1/3 of patients who do not 'recover' after ECs treatment; ALL their symptoms.............a new diagnostic tool for ME ?

 

[Tom Kindlon]

Somebody sent me this letter which they emailed to Bristol Un ethics department, NHS trial co-ordinator, The Bristol students. Said I could post it around.

https://www.mediafire.com/?jyfyn42c390lq8a

 

[Dolphin]

https://twitter.com/i/web/status/796666981973889025

 

[2kidswithME]

https://twitter.com/i/web/status/796666981973889025

Just to clarify, OMEGA (Oxfordshire ME Group for Action) has been around for nearly 30 years, and is not related to the Opposing MEGA group, which has (unfortunately) picked up the same acronym for their campaign. We publish a newsletter 4x yearly, lobby on various fronts (improved services for children for one), and have several support groups that meet regularly.

PK, chair of OMEGA

 

[Dx Revision Watch]

BBC reply to the Countess of Mar (November 21)

http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf