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Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

boolybooly

Senior Member
Messages
161
Location
Northants UK
This would seem to be a good time for patients and advocates and charity reps to politely ask the Nacul team to tag ICC onto their criteria for cohort selection. I appreciate the cohort has already been chosen using the various criteria mentioned elsewhere, but surely it would possible to re-assess each participant using ICC and input this data digitally and thus help to make sure that analyses reflect the best diagnostic tools as well as the frankly useless (think 'Fukuda'). Surely it would be possible to use the database to extrapolate the usefulness of these various criteria in terms of the resulting biomedical information the project generates?

Yes, I suppose if the case history is captured with the sample then it is possible to apply criteria retrospectively. You just need to be sure that the case history is recorded at a high enough level of detail to futureproof that possibility.
 

charles shepherd

Senior Member
Messages
2,239
The clinical assessments that take place on everyone who is being considered for donating blood samples to the ME Biobank involve taking a very detailed clinical history, a full physical examination and a number of blood tests - all of which are more extensive than would be required to make a basic diagnosis of ME/CFS.

We only then take samples from people who meet Fukuda and Canadian criteria for ME/CFS. However, because a large amount of information on symptoms and examination findings are recorded it is possible to also sub-group people into other diagnostic criteria for ME and CFS

Dr Charles Shepherd
Chair - ME Biobank Steering Groupo
 

charles shepherd

Senior Member
Messages
2,239
ME Biobank recruitment protocol:

Once eligibility was established, the research team booked appointments for participants for

clinical assessments and blood sample collection. Participants in the Greater London area

with severe disease and/or mobility restrictions were seen at their homes. Consenting

respondents ineligible according to the screening questionnaire were thanked by the

research team and told that their ineligibility was based on the exclusionary criteria.


Clinical assessments & phlebotomy

Clinical assessments included the following clinical measurements:

• blood pressure and pulse taken at rest in seated and standing positions (both taken

twice);

• hand grip strength test (three repeated 3-second measurements using the dominant

hand);

• waist circumference;

• standing height;

• weight and bioimpedance (a measurement of body composition estimating body fat

and lean body mass);

• spirometry; and

• pulse oximetry.


Recruitment took place in the East of England and within Greater London. Baseline blood

tests were carried out at the James Paget University Hospital in Great Yarmouth, the Royal

Free Hospital in London, and the Norfolk and Norwich University Hospital (NNUH). Samples

were transported to the UCL/RFH BioBank immediately after collection to ensure receipt by

the BioBank within six hours of collection for processing, aliquoting, and storage.


Baseline blood tests included a full blood count, blood chemistry, calcium, electrolytes,

creatinine, serum creatine kinase, liver function tests, erythrocyte sedimentation rate, Creactive

protein, rheumatoid factor, thyroid function tests, tissue transglutaminase

antibodies, serum vitamin B12, and serum folate. Additionally, participants were asked at the

time of the clinical assessment to produce a sample of urine to be screened for glucose,

blood, protein, and specific gravity.


The research team sent questionnaires to participants at the time of the blood collection

covering demographic, socio-economic, and other exposure variables as well as clinical

history, including information on illness onset and an extensive list of symptoms, family

health history, and symptoms currently being experienced (at the time of the blood

collection), which can all be linked to both the baseline laboratory tests and the de-identified

blood samples. Questions were chosen taking into account the team’s experience with

ME/CFS research (4, 9) and variables captured by the UK Biobank project (10).


The following instruments were used to further characterise participants:

1 Medical Outcomes Survey Short Form – SF-36v2 (11) for assessment of functional capacity;

2 the pain analogue scale (12), for assessment of pain severity;

3 a fatigue severity scale (13);

4 the energy fatigue scale (14);

5 a fatigue disability scale, based on the Karnofsky scale (15),

6 the General Health Questionnaire – GHQ-28 (16-24),

7 and the Epworth sleepiness score (25).


All participants meeting eligibility criteria were asked for blood samples (approximately

95ml), from which approximately 15ml was used for baseline laboratory tests to exclude

other diagnoses. The remainder was processed and stored at the UCL/RFH BioBank for

future ethically-approved studies, including those planned by the LSHTM research team, for

which participants have given “a priori” consent.


The UCL/RFH BioBank, a state-of-the-science facility licensed by the Human Tissue

Authority (Licence number 11016), which holds specific ethical approval for the processing

and storage of biological samples. No personally-identifiable information is stored in the

UCL/RFH BioBank database and so stored samples can be linked anonymously to a range

of clinical and other non-identifiable data from participants.


Figure 1 summarises the UK ME/CFS Biobank recruitment procedures. Further details on

the collection, transport, processing, and storage of blood samples follow:

• The LSHTM team prepared blood collection kits including the required number and

type of Vacutainer tubes and a needle. SOPs for blood collection and transport were

followed.

• Staff members at the UCL/RFH BioBank followed SOPs for receipt, logging,

processing, and storage of samples. The Vacutainer blood tubes received at the

BioBank yielded aliquots of serum, plasma (from both NaHep and EDTA tubes),

peripheral mononuclear blood cells, a red blood cell/granulocyte pellet, and whole

blood, in addition to the PAXgene tube for RNA. The separated cells, plasma and

serum samples can be used for a range of investigations and techniques, including

for RNA and DNA extraction.

• All samples can be stored at the UCL/RFH BioBank for up to five years in the first

instance. Inventories of samples in the BioBank are sent regularly to the research

team.

CS
 

lilpink

Senior Member
Messages
988
Location
UK
We only then take samples from people who meet Fukuda and Canadian criteria for ME/CFS. However, because a large amount of information on symptoms and examination findings are recorded it is possible to also sub-group people into other diagnostic criteria for ME and CFS

So does this mean they will reassess for ICC? I think it would be very useful going forward. Can you ask them to do this please?
 

charles shepherd

Senior Member
Messages
2,239
Thanks very much for doing that!

I will let the Biobank team know

Have you met Caroline? - our research nurse who lives in Cambridge and does the home visits to collect blood samples from people with severe ME/CFS

CS

Reply from the Biobank team:

One can donate from other countries- you just have to click on ‘Enter address manually’ (right underneath the postcode box) and then you can select your country from a drop-down menu.

Sorry that it’s not totally clear at first glance - Charities Aid Foundation’s website design, not ours!
 

charles shepherd

Senior Member
Messages
2,239
So does this mean they will reassess for ICC? I think it would be very useful going forward. Can you ask them to do this please?

There is no intention at present to assess the clinical histories from all the people who have donated blood samples to the ME Biobank to see if they also meet ICC diagnostic criteria

This would be a costly and time consuming process

CS
 

lilpink

Senior Member
Messages
988
Location
UK
There is no intention at present to assess the clinical histories from all the people who have donated blood samples to the ME Biobank to see if they also meet ICC diagnostic criteria

This would be a costly and time consuming process

CS

They have replied thus on FB:

UK ME CFS Biobank: A note on International Consensus Criteria- although we select for the biobank based on the CDC 1994 and Canadian Consensus Criteria, the data we collect also allows for results to be sorted by ICC, London or IOM criteria if a researcher wants.

***

Given other groups are using ICC as their prime criteria it would seem sensible to start using ICC to present future results within its framework. That way it would be easier to compare with the work of other researchers who are intent on ensuring the tightest possible & most up to date criteria.
 

boolybooly

Senior Member
Messages
161
Location
Northants UK
The clinical assessments that take place on everyone who is being considered for donating blood samples to the ME Biobank involve taking a very detailed clinical history, a full physical examination and a number of blood tests - all of which are more extensive than would be required to make a basic diagnosis of ME/CFS.

We only then take samples from people who meet Fukuda and Canadian criteria for ME/CFS. However, because a large amount of information on symptoms and examination findings are recorded it is possible to also sub-group people into other diagnostic criteria for ME and CFS

Dr Charles Shepherd
Chair - ME Biobank Steering Groupo

Thanks for explaining, that makes perfect sense.

I'd like to think these guys would be up to the job?

Yes it sounds like it. Never hurts to keep them on their toes though ;)

Though seriously I am very grateful for the work of Dr Charles Shepherd and the ME Association and all those involved with the biobank and am very hopeful it will be a solid foundation for future study.

I have donated but after living on benefits for thirty years, ten undiagnosed, with two episodes of wrongful assessment and reduction in benefit and successful appeal I tend to live hand to mouth and watch my back and avoid commitments to regular outgoings and give what I have got rather than promise what I cannot be sure of having when the time comes.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
Thanks for keeping me updated on this. I have now set up an annual direct debit with gift aid.

Thanks @JohnCB,

I do hope that Phoenix Rising does not collapse this weekend. But it if it does my last post will be to urge everyone to make a donation to the Biobank to try to ensure its future and the future of international collaboration. Without PR and its communication channel I fear that hopes for ME research are slim. I will not be involved any more because I have no other line of communication - which I suspect is true for many members.

Hopefully, sense will prevail.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I do hope that Phoenix Rising does not collapse this weekend. But it if it does my last post will be to urge everyone to make a donation to the Biobank to try to ensure its future and the future of international collaboration.

Hi Jo - if you want people to support the Biobank, I think it would be a good idea to start a new thread with an appropriate title, saying so. People often stop reading news threads after the first few posts and a lot of people won't have seen your suggestion.

It would help if the post included info on how overseas people can donate:

charles shepherd said:
One can donate from other countries- you just have to click on ‘Enter address manually’ (right underneath the postcode box) and then you can select your country from a drop-down menu.

And if CureME could be persuaded to set a crowdfunding target of £95,000 for the next year's running costs and to set up some kind of running total on their site to encourage donations, even better. These things work a lot better if people can see the total going up.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Thanks @JohnCB,

I do hope that Phoenix Rising does not collapse this weekend. But it if it does my last post will be to urge everyone to make a donation to the Biobank to try to ensure its future and the future of international collaboration. Without PR and its communication channel I fear that hopes for ME research are slim. I will not be involved any more because I have no other line of communication - which I suspect is true for many members.

Hopefully, sense will prevail.
I'm sure there will be a new forum somewhere with all the same faces.

EDIT: The initiation ceremony involves two dowsing rods and a pint of Adnams, so it should be right up your street :thumbsup:
 
Last edited:
Messages
17
Thanks @JohnCB,

I do hope that Phoenix Rising does not collapse this weekend. But it if it does my last post will be to urge everyone to make a donation to the Biobank to try to ensure its future and the future of international collaboration. Without PR and its communication channel I fear that hopes for ME research are slim. I will not be involved any more because I have no other line of communication - which I suspect is true for many members.

Hopefully, sense will prevail.
Having only recently dipped into PR I am unsure of what the threat of collapse will be? Is it resources, or "ownership issues" of the forum? Can someone enlighten me?
 

Yogi

Senior Member
Messages
1,132

Thanks Trishrhymes. I have not been very aware of these PR issues as so much real important stuff is going on. I was trying to understand what had happened but was very messy and could not get my head round it.

Why can these people at PR not focus on the real task and joint goals of the ME community as we have made so much progress recently with biomedical research and taking down PACE and this is a terrible diversion and waste of our energy?

I was very concerned about Jonathan Edwards message above. Why would PR collapse this weekend?

So many members are very ill and use PR to communicate with other ME sufferers and cannot and should not have to deal with these unnecessary issues. Those people who are responsible for this should bear this in mind and sort this out for the benefit of the whole community and not only focus on their own personal interests.

Thanks for this link with the timeline/summary.

Focus on the real goal and let's not get diverted!.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Hi Jo - if you want people to support the Biobank, I think it would be a good idea to start a new thread with an appropriate title, saying so. People often stop reading news threads after the first few posts and a lot of people won't have seen your suggestion.

It would help if the post included info on how overseas people can donate:

And if CureME could be persuaded to set a crowdfunding target of £95,000 for the next year's running costs and to set up some kind of running total on their site to encourage donations, even better. These things work a lot better if people can see the total going up.

Lat time I looked I did not seem to be able to start threads. Maybe I am in the naughty corner.

I agree that a target would be good and having a running total on the CureME site would encourage people. I am waiting to hear back from their administrator on how things are going and perhaps can feedback when I hear.