• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

FORWARD ME GROUP: Minutes for the meeting held at the House of Lords on December 7th 2016

C

Chrisb

Senior Member
Messages
1,051
user9876 said:
I know few people working in data analytics who would apply algorithms without having a very good understanding from subject matter experts. Which leaves me worrying at Holgate's comments.
Click to expand...

Apparently no one thought to ask who the expert on adult ME would be directing decisions on the groupings. It seems odd that such a fundamental question should not be addressed in any way. One is left wondering whether the alleged withdrawal of White from the project to take on a mere advisory role is only cosmetic.
 
U

user9876

Senior Member
Messages
4,556
Chrisb said:
Apparently no one thought to ask who the expert on adult ME would be directing decisions on the groupings. It seems odd that such a fundamental question should not be addressed in any way. One is left wondering whether the alleged withdrawal of White from the project to take on a mere advisory role is only cosmetic.
Click to expand...

A think there are a lack of experts to ask in the UK. But patients do know a lot about their symptoms etc so this makes the PAG important as a set of subject matter experts.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Last edited:
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
So thing that I take from this is that Holgate is still over promoting MEGA. At the moment it only has firm plans to replicate the existing ME biobank (with all the potential problems there already). Everything else, all the big data studies, haven't even been properly thought of. So we are being asked to sign up to thinking the new biobank is a good idea on the sales pitch of the big data studies - that's extremely deceitful in my view.

And as noted already, no discussion of Crawley's involvement. With her involved, I won't ever be supporting MEGA.

Can anybody explain/guess why Holgate doesn't want to expand the existing biobank? What flaws stop it from being used? As this would seem the most sensible way to go about things to me.
 
Cinders66

Cinders66

Senior Member
Messages
494
How many with more recognised ME have a new NICE criteria based bio bank as a top research priority ? From a detached academic point of view, starting from scratch and opening as broad as possible to encompass all with vague fatigue syndromes burdening the NHS might seem like an ok way to now start doing biomedical research (20 odd years into my life ruining illness) but I don't think Holgatre gets, nor do I think the charities who attend Foward for ME represent, the need in the community in what Holgate would class "the more severe forms". I think the UK is taking a very unilateral approach in the way it's doing things and not responding to the level of neglect & need in the Classic CFS and ME groups , a population in size & disability equal to or greater than MS But lost in this U.K. "CFS umbrella " he & the BPS Lot insist we must have as our over-arching starting point. Whatever good that comes out of this Won't be for years.

This. Is the need
https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood
 
Last edited:
Demepivo

Demepivo

Dolores Abernathy
Messages
411
Are Invest in ME members of the Forward ME Group?

I thought they were looking for answers to Holgate's email to Jonathan Edward about IiME's stance on MEGA.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Demepivo said:
Are Invest in ME members of the Forward ME Group?

I thought they were looking for answers to Holgate's email to Jonathan Edward about IiME's stance on MEGA.
Click to expand...
Nope, the members of the group are
Click to expand...
from http://www.forward-me.org.uk/LinkedOrganisations.htm
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
charles shepherd said:
Sounds as though you know something about cluster analysis in relation to this dreadful term 'big data' !
Click to expand...
Not in any depth. What I learn from colleagues and what I read, along with 30 years experience as a software design engineer.

charles shepherd said:
Do you have academic expertise in this area of statistical analysis?
Click to expand...
No. Just engineering HND from said 30 years ago.

One thing I do wonder is regarding ...
You then examine them and perform various measurements within those groups, use standard clinical tests and then enter all the data into a computer programme to identify sub-types. This is called “cluster analysis”.
Click to expand...
Do the "standard clinical tests" include subjective questionnaire-derived data? If so, given the layers of people involved in collecting data from such a huge number of people, let alone training some to collect it, it feels like the data itself would almost certainly be subject to considerable interpretative variation at source. Presumably this would then skew any reported clustering; I do not know how catastrophically. Also, I do not know how well cluster analysis copes with subjectively derived data anyway.

I would think it essential to have a data scientist on the team with a proven track record in data mining technologies, at least in a consultancy role, throughout the whole study life cycle. Too much at stake, and too many chances to mess up, to get that aspect wrong.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Barry53 said:
Do the "standard clinical tests" include subjective questionnaire-derived data? If so, given the layers of people involved in collecting data from such a huge number of people, let alone training some to collect it, it feels like the data itself would almost certainly be subject to considerable interpretative variation at source. Presumably this would then skew any reported clustering; I do not know how catastrophically. Also, I do not know how well cluster analysis copes with subjectively derived data anyway.

I would think it essential to have a data scientist on the team with a proven track record in data mining technologies, at least in a consultancy role, throughout the whole study life cycle. Too much at stake, and too many chances to mess up, to get that aspect wrong.
Click to expand...

We may be getting the same discussion on two threads now (also Mega website thread) but people are probably looking at both.

This would be my concern. It sounds as if there will not be enough money to collect data in any systematic fashion using the same trained staff for all cases and you really need that, otherwise local people just fill in boxes how they like to save time. Human nature is all pervasive in science. And I do not really know what the standard clinical tests would be, or whether that has even been thought through.

In general I have no faith in this 'hypothesis free' approach. In contrast to Dr Holgate's statement, all the significant breakthroughs in arthritis research that I know of were very much hypothesis driven. The fishing exercises that have come recently have not taken things any further.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
charles shepherd said:
SC could not attend because she was out of the country
Click to expand...

On 9 December, I received an automatic response to an email to Sonya Chawdhury (on an matter unrelated to MEGA) which stated that Sonya was taking extended leave and would not be picking up or responding to emails until she returns on 4 January.

As Sonya is the representative on the MEGA team for the four participating patient orgs, who has been identified as the patient org representative for the period 9 December to 4 January, during which papers and key information is being sent out to the PAG group, the PAG is establishing itself, e-group meetings or teleconference are expected to be facilitated for 29 or 30 December, with a "Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting" scheduled for 4 January?

There is a lot going on during this period in preparation for submitting an application for funding in early January.

So who is acting as rep for the patient orgs in Sonya's absence?
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
TiredSam said:
Indeed. Looks like she forgot to make sure there's a system in place for dealing with important matters during her absence, which is standard procedure in most organisations. More disorganisation and lack of consideration for patients from MEGA.
Click to expand...

The auto email does give contact details for her PA and also for the main AfME office.

But her role in the MEGA team seems to me to sit outside day to day AfME admin and there is nothing within the auto email in respect of queries pertaining specifically to MEGA.

Will Dr Shepherd confirm who is representing the patient organisations in SC's absence, please?
 
Last edited:
You must log in or register to reply here.