Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

Sasha

Sasha

Senior Member (Voting Rights)
Several related threads have been merged. Link to the research protocol for the literature review here.

Story in the Australian news:

SAHMRI researchers in hunt to find cure for Chronic Fatigue Syndrome

WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.

Rebecca Baker
The Advertiser
NOVEMBER 2, 2017

WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.

Thousands of samples taken for the study are now being stored in a freezer to allow each one to be sructinised during a painstaking process, expected to take about a year.

Senior research fellow Michael Musker said the work being done at the South Australian Health and Medical Research Institute to try and understand Chronic Fatigue Syndrome (CFS) had “world-wide significance”.​

Full story here: http://www.news.com.au/lifestyle/he...story/055d7aa1a1bc0ae1c0ea76029d1e8b2a#.ig02r
 
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Sasha said:
WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.
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This would be more interesting if it followed exertion or similar. I'm not sure we'd have much variation sitting around on an average day.

A more in-depth article which appears to be about the same study is at https://meaustralia.net/2016/08/14/meet-the-scientists-dr-michael-musker/
Patient recruitment info & consent form: http://sacfs.asn.au/download/PICF Chronic Fatigue Syndrome v1.1 24-3-16 clean.pdf

The three investigators listed are all primarily involved in depression research. Their interest in genetics doesn't seem to go beyond discovering which antidepressant works best for each patient. The blood parameters they're interested in for CFS are ones which they tie to mood disturbance, weight gain, and sedentary behavior.

They don't give a clear statement of recruitment criteria or symptoms, but vaguely refer to the CCC, though also list Fukuda when recruiting for an intern. They habitually use the term "CFS", and refer to the relevant symptoms as "fatigue" and "exhaustion". Musker responded with a lot of waffle to ME Australia when asked what "recovery" means (it's different for everyone), and he won't comment on PACE. He thinks CBT and GET research is a good idea, and can be helpful:
ME/CFS has many negative effects on the person’s life, so anything that tackles some of the negative thinking and behaviour that might develop over time, would be helpful.
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They do incorporate biological aspects into their research, but they are very much a psychosocial group.
 
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Valentijn said:
The blood parameters they're interested in for CFS are ones which they tie to mood disturbance, weight gain, and sedentary behavior.
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:(:banghead:

Valentijn said:
They habitually use the term "CFS"
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CFS is the main term used in Australia by doctors and researchers. It's really only the researchers who have good links with the worldwide research that use ME or ME/CFS. It is a good clue about how well informed they are ;)
 
Valentijn said:
This would be more interesting if it followed exertion or similar. I'm not sure we'd have much variation sitting around on an average day.
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Basically this, they may find something but adding a change in blood chemistry by pushing the thing that burns us is more likely to show something useful. If anyone knows a way to give them this 'revolutionary' idea please go for it
To be honest i don't think what they are doing is going to find much, though i would not mind being proven wrong.
 
Alvin said:
Basically this, they may find something but adding a change in blood chemistry by pushing the thing that burns us is more likely to show something useful. If anyone knows a way to give them this 'revolutionary' idea please go for it
To be honest i don't think what they are doing is going to find much, though i would not mind being proven wrong.
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They may find Leptin abnormalities, for a subset. But from reading the links, and their lack of ME expertise, I doubt they would understand why or how to correct it.
 
I think this should be an exciting study because I believe that studies should be looking for changes over time in individual patients as this may provide more clues than lots of samples across a population. Its the kind of thing I think the metabolic studies should be doing.

But it is a bit disappointing in that they aren't measuring much and they aren't using an activity monitor.

I would be really interesting in their stats analysis plan (probably more so if they used an activity monitor). There I think it would be great to look for lag times between activity, blood results and how people report they feel.

If nothing else perhaps this study will show ideas and the possibility of continuous monitoring to other groups.
 
MErmaid said:
Research bias, political motivations, financial incentives....I think we have seen it all. Research funds keep people employed, labs operating, and gives the outward appearance of progress.
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I'm not that cynical, progress does happen and we do need to cast a wide net because if we only researched what we know will give the results we want we would not have to research in the first place. However adding intelligence to research will increase the odds of success.
 
Alvin said:
I'm not that cynical, progress does happen and we do need to cast a wide net because if we only researched what we know will give the results we want we would not have to research in the first place. However adding intelligence to research will increase the odds of success.
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I certainly don’t feel cynical about all research. And I agree adding intelligence will increase the odds of success. I feel that recent cancer research is a good example of how to increase intelligence, and thus yield a better outcome. But with ME, I question some of the studies, in particular the ones that lack a basic understanding of PEM.
 
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MErmaid said:
I certainly don’t feel cynical about all research. And I agree adding intelligence will increase the odds of success. I feel that recent cancer research is a good example of how to increase intelligence, and thus yield a better outcome. But with ME, I question some of the studies, in particular the ones that lack a basic understanding of PEM.
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I agree, at this point we are ahead of many of the researchers so they would actually benefit from consulting us until they get up to speed (assuming they actually want to get up to speed)
 
This is a very short video, but there's more text at the second link. I note that there is some more on Mike Musker elsewhere here (this site).

Station: 9 News

Date: May 30, 2019

WebTV:
https://www.9news.com.au/videos/new...-on-chronic-fatigue/cjwafqpqt000f0gownd858hug

Ref:
https://www.9news.com.au/national/s...ue-study/d25d98fb-5c96-472a-ad2e-fccf813c3e0a

Item: New Australian ME study

New South Australia study may provide information on chronic fatigue.

Researchers believe markers present in the blood of chronic fatigue patients could be the key to developing a test for the illness in the future.
 
Seems there was some buzz in 2017 when Michael Musker looked for markers by drawing blood every 7th minute and hoped results would be ready within a year. But I don't think anything has been published yet?

In the article from yesterday he draws blood when the patient is feeling very bad and then again in a year "when the patient is feeling better". I didn't understand what he meant by that. When I clicked on the link in the article to his university, the only thing I could find concerning his studies was the study from 2017.
 
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Mike Musker spoke about his research on local ABC radio in Adelaide a few weeks ago also (unfortunately the recording of the show is marked as 'expired' and has been taken down from the ABC website). The interview didn't contain a lot more information on his research than in the 9 news story above, however he did stress that ME/CFS is a serious illness (he made the point that it is 'not psychological') and he attempted to explain the range of symptoms that sufferers experience. He did seem to display a real interest in listening to people with ME/CFS about their symptoms.

One thing that impressed me was that he corrected the host for referring to ME/CFS as 'chronic fatigue' and used 'Myalgic Encephalomyelitis' as often as he could. In fact, one person on Facebook said that they'd never heard 'Myalgic Encephalomyelitis' used so many times in one interview in the media in their whole life.

Edit: it looks like he also spoke to another radio station. It's available here. (This wasn't as good as his ABC interview which was the next day so I wonder if he got some feedback from the local ME/CFS Society in between interviews?)

Like many other of our researchers it seems, they're also fundraising: https://sahmri.giveeasy.org/mecfs
 
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Art Vandelay said:
Mike Musker spoke about his research on local ABC radio in Adelaide a few weeks ago also (unfortunately the recording of the show is marked as 'expired' and has been taken down from the ABC website). The interview didn't contain a lot more information on his research than in the 9 news story above, however he did stress that ME/CFS is a serious illness (he made the point that it is 'not psychological') and he attempted to explain the range of symptoms that sufferers experience. He did seem to display a real interest in listening to people with ME/CFS about their symptoms.

One thing that impressed me was that he corrected the host for referring to ME/CFS as 'chronic fatigue' and used 'Myalgic Encephalomyelitis' as often as he could. In fact, one person on Facebook said that they'd never heard 'Myalgic Encephalomyelitis' used so many times in one interview in the media in their whole life.

Edit: it looks like he also spoke to another radio station. It's available here. (This wasn't as good as his ABC interview which was the next day so I wonder if he got some feedback from the local ME/CFS Society in between interviews?)

Like many other of our researchers it seems, they're also fundraising: https://sahmri.giveeasy.org/mecfs
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I've met Mike Musker and he's a decent bloke. I'd like to point out that he's the clinical lead, rather than a medical scientist.

I don't really think the (Leptin) study is going to be a big breakthrough. But it is the first time so many samples have been taken within a short period of time so looking at the kinetics will be interesting, even if the results do not distinguish between patients and controls with a reasonable degree of sensitivity and specificity.
 
Finally someone who is working with the fluctuating nature, trying to catch flares in the act. I think this is a key aspect that needs to be resolved and will provide an important piece of the puzzle. The difference between a stable plateau and flares is enormous and needs to be the focus of more research. Single measurements that ignore the fluctuations can't account for what changes are happening during flares.

It will be very difficult to do if it requires medical imaging, which is very hard to schedule around "OK, the patient is flaring up let's do it", but if it's in the blood holds up then this may at least catch it.

I think there even is a way to provoke it without exercise: noise. Just about any stimulation will work but I get PEM just as bad from excessive noise than from physical exertion. Normally this would be unethical but seriously there has to be a loophole given that the status quo is "harm is impossible" so even if the premise is to harm the patient to monitor the changes then language can be adapted to make it acceptable. I'd do it, even knowing how bad it would hurt me.

Dr Moreau is attempting kind of the same thing but the cuff is really minimally inducing, it does not really compare to the effect that cacophonic loud noises will provoke in most ME patients.

It could also be useful for Younger and VanElzaker's imaging research. The conditions to provoke PEM with noise would have to be developed along with patients to make it standardized but I think it would work. When there is excessive noise I feel like I am gradually getting more and more concussed to the point of near paralysis. This seems to be strictly a neurological response and should likely show up on imaging that is sensitive enough.
 
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