Questions for the CureME/UK ME/CFS Biobank team, what do you want to ask? [June 2019 Q&A]

So the kind folks of the CureME/UK ME/CFS Biobank team (https://cureme.lshtm.ac.uk/) have agreed to another Q&A with us, currently scheduled for w/c 20th May (exact day to be confirmed). This time around it will be a recorded video one.

As per normal I'm looking for your suggestions on what I can ask them, so please let me know what questions you would like put to them. To inspire you, here are their recent publications:

Handgrip strength study
Paper: https://www.frontiersin.org/articles/10.3389/fneur.2018.00992/abstract
Discussion thread: https://www.s4me.info/threads/hand-...l-biomarker-for-me-cfs-2018-nacul-et-al.6612/

The UK ME/CFS Biobank: a disease-specific biobank for advancing clinical research
Paper: https://www.frontiersin.org/articles/10.3389/fneur.2018.01026/full
Discussion thread: https://www.s4me.info/threads/front...research-into-me-cfs-lacerda-et-al-2018.6672/

Analysis of interviews with participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.
Paper: https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857
Discussion thread: https://www.s4me.info/threads/hope-...-biomedical-research-2019-lacerda-et-al.7605/

Cellular immune function in myalgic encephalomyelitis/chronic fatigue syndrome
Paper: https://www.frontiersin.org/articles/10.3389/fimmu.2019.00796/full
Discussion thread: https://www.s4me.info/threads/cellu...atigue-syndrome-me-cfs-2019-nacul-et-al.8883/

Evidence of Clinical Pathology Abnormalities in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from an Analytic Cross-Sectional Study
Paper: https://www.mdpi.com/2075-4418/9/2/...xVWU5Snxv-z1AoH46NOmG9CgAx47Ge6bi-T_j--JUMxNI
Discussion thread: https://www.s4me.info/threads/evide...analytic-cross-section-2019-nacul-et-al.9024/


And if you want to look back at out last chat with them, this can be found here https://www.s4me.info/threads/uk-me...th-december-2017-2-30-to-3-30pm-gmt-utc.1458/

ETA: We've had to postpone the Q&A a couple of times, latest scheduled date is 3rd June.

 

Thanks so much everyone - we're looking forward to answering your questions once again.

As well as the papers above, feel free to ask us about:

1) Our ongoing research and research grants;
2) Current biobanking work - participant recruitment and releases to Profs Baird and Khan;
3) Recent conferences, collaborations and meetings (Emerge Australia, NIH USA, EUROMENE or Luis's work in Canada);
4) ... or anything else!

As always, we don't comment on other researchers' work (except in scientific journals, or in very general terms), and we can't answer everything - but we'd love to hear from you.

-- Jack

 

Struggling to phrase this succinctly but...are you doing / what are you doing to educate clinicians about your important work and how they can possibly help?

The main thing I’m thinking is that your research is really positive for the UK and for ME patients around the world, but it’d be a shame if this also doesn’t go hand in hand with improving the care that ME/CFS patients get in the UK.

I feel like so much of what clinicians do is marred by poor data - I’ve been a patient with my GP for several years, and virtually no meaningful data that I give them (either anecdotally or via blood tests) seems to be fed back to research.

Anyway, hope at least some of that makes sense, thank you for all you do!

 

I would like to learn more about the hand-grip study results.

I find it impressive that such a simple test could differentiate ME/CFS patients from healthy controls and MS-patients. But I don't quite understand how I should interpret the results since only three measurements were taken. One would think that for muscle fatiguability, as frequently reported in this illness, a longer exertion is required. Is it possible that the results were due to deconditioning or is this hypothesis fully excluded because the study used sedentary controls?

It would also be interesting to see what happens if more measurements are taken: whether ME/CFS patients show a larger drop in strength compared to controls as the number of exercise increases. As I understand the literature, there were some small studies around 1990 that showed that muscle strength and fatigability were normal in patients with ME/CFS, after which few have taken up the subject. Your paper lists Meeus et al., 2016, which found a lower recovery of muscle strength in ME/CFS patients, but I would like to point to another Belgian study that might be relevant. Eskens et al.,2015 used the timed loaded standing test and found that endurance was lower in a large sample of 72 CFS patients than in 30 osteoporotic patients (Source:https://www.ncbi.nlm.nih.gov/pubmed/26230614).

So perhaps this is a subject that has been overlooked. Would it be possible to instruct ME/CFS patients to repeat the handgrip strength test for a longer period of time (say 20-30 minutes) to see what happens with their muscle strength and recovery?

Many thanks in advance.

 

Yes to that. My muscle strength has not budged much. I could still do several pull-ups as easily as I used to. I was always very active physically and did a lot of weight lifting before I got sick. I haven't lost much of that. I would be wiped out from it, though, but muscle strength has not changed much.

But I have zero resistance or endurance. I simply cannot sustain it, in ways that go far beyond simply being out of shape. Grip is a maximum unique data point, it seems the capacity to sustain could be a far more useful measure.

 

Same here

 

I should like to know whether the Biobank guys can look into whether MCAS, mast cell activation syndrome, is involved in their ME patients. Could it even be the root cause (or one of them) of ME?

 

I saw on the last symposium that some like to know and organize the data by how long you have been sick.
So what type sub typing and grouping are they doing?

 

Do they track what differences have been found so far between ME patients and controls in their samples?

Is genetic testing being done to determine deviations and if so have results been found yet?

Are there any standardized tests being done on current and incoming samples and if so have any shown abnormalities or common abnormalities?

 

The Second phase of one study started last year and includes new participants, some of whom travel to London for the appointment. As ‘walking wounded’ I would count myself as ‘moderate’.

Just had appt #2 on Tuesday so my brain is struggling to write more now. Happy to answer questions! Give me a few days......

 

At the EMERGE Conference Eliana lacerda (EUROMENE) gave a commitment that the EUROMENE biomarker group will:

• make recommendations on biomarkers (potential diagnostic tests) in February/March 2020 [10 to 12 minutes].
• will advocate (lobby) European MPs (MEPs) i.e. to deliver the EUROMENE recommendations [13 to 14 minutes].

[https://mecfsconference.org.au/videos/eliana-lacerda/]

Do you:

• have experience with applying for EU funding?
• know if/how the patient community can help?

@EspeMor

 

I would like to ask if there is going to be any further studies on red blood cell differences to healthy controls or if there are any screens on samples taken looking at RBC count etc through standard tests. I seem to remember that there are some findings on unusual properties of the deformability of RBC’s in PWME. I think from Australia and OMF. I think both studies were small. Could this be a straightforward replication study using the Biobank samples? I found this particularly interesting since one of the only screening test that showed something slightly unusual for me during diagnosis was a low rbc count.

I had blood taken today so it was uppermost in my mind...perhaps it’s already been discussed?

 

Ron Davis (OMF) has been looking at red blood cell deformability in ME. However, I don't think they've reached the point where it's a definite yes/no i.e. a diagnostic test for ME or not. It's in one of Ron's video's.

I noticed something last night on Health Rising; Cort has an article on ME as an unusual form of diabetes. One of the consequences of diabetes is reduced red blood cell deformability. I haven't noticed anything about low blood cell count in ME.

 

Bump, any other questions?

 

Given limited geographical reach could a licensed network of biobanks be established- perhaps linked to research establishments?

Is there a known difference, in gene expression, between rural and urban patients? Given pesticide and organophosphate use there may be differences? Or perhaps this has been discounted.

 

Is there any way they can expand on or replicate Dr Kerr's work on sub-types?
If there are distinct subtypes, looking for a single cure/remedy for all is unlikely to be successful.

Edited to clean up quoting.

 

Postponement announcement

Having had a quick chat with Jack at CureME, we have mutually agreed to postpone our Q&A. They have a lot of pressures on their time and energy right at the moment, as do I, so we have provisionally rescheduled the Q&A for Weds 29th May.

One upside to this is that it allows more time for questions for them to be collected, so please do post any that you might have.

 

Ron Davis highlighted that the best results from the nano-needle came from samples [peripheral blood monocytes] tested within 5 hours of drawing the blood. Karl Morten said the same (from memory) in New Zealand talk re ME/CFS plasma tested on muscle cells. I think this (5 hour window) also applied to the phenylalanine testing [RAMAN spectroscopy] which Karl etc. carried out on peripheral blood monocytes.

Bhupesh Prusty demonstrated mitocondrial fragementation in ME i.e. in peripheral blood monocytes. Bhupesh suggested that the observed mitocondrial fragementation was caused by certain micro-RNA's. On the face of it peripheral blood monocytes could be analysed to see if the levels of these micro-RNA's is a potential diagnostic test.

The above are statements - I'm trying to think of a question!

I suppose the question is whether samples need to be taken and analysed within 5 hours or whether they can be processed and stored for subsequent testing e.g. the peripheral blood monocytes removed and subsequently tested for micro-RNA's.

@EspeMor