A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

[Robert 1973]

“There have been many previous attempts to find a specific biomarker for CFS. The problem is not differentiating patients with CFS from healthy controls. The issue is can any biomarker distinguish CFS patients from those with other fatiguing illnesses? And second, is it measuring the cause, and not the consequence, of illness? This study does not provide any evidence that either has finally been achieved. It is also regrettable that it is claimed that such a test would give “scientific proof” of the existence of the condition, and prove it is “not imaginary”. You don’t need a blood test to prove that an illness exists, and nor does the absence of such a test mean that it is “all in the mind”. Any sub who runs a headline that says ‘new test proves CFS is real and not psychiatric’ should be ashamed of themselves.”

SW said: "is it measuring the cause, and not the consequence, of illness?"

If it really proved to be a unique biomarker, would SW's comment matter?

Absolutely not. It would still be a biomarker. Wessely has put a foot wrong there.

I agree that if it proved to be a unique biomarker for ME/CFS it would not matter if whether it was a cause or effect of the illness (although that would still be interesting and useful to know). However, I’m not sure that is what SW was trying to say – and even if it was, it still raises an interesting point.

My interpretation of SW’s quote was that he was saying that: 1) we need to establish whether this test differentiates between CFS and other fatiguing illnesses; 2) we need to establish whether it differentiates between CFS and people who are similarly inactive/incapacitated for other reasons (not fatigue) – in other words if it may be an effect of chronic inactivity.

On the second point I think it is important to note that if the test can’t make this differentiation, it would not add any weight to the GET/CBT deconditioning model of ME, any more that it would add weight to a deconditioning model of MS. However, if the test was able to differentiate CFS from incapacitated controls without fatiguing illness*, it would disprove the deconditioning theory of CFS, even if the test could not differentiate CFS from other fatiguing illnesses.

Nobody disputes that there are detectable physiological effects of chronic inactivity, but the deconditioning theory requires these to be the only, or at least primary, physiological effects of the illness.

*NB I don’t like the term “sedentary” because people may be seated in a wheelchair but still very fit and active.

Yes i said MS... i was saying to test sedentary & MDD as well as other illnesses like MS.

I wasnt meaning not to test MS etc, just that even if it does turn out that people with other conditions have this same result, then it still indicates that pwME do actually have something biologically wrong... as long as sedentary controls do not have the same result. Therefore, it seems to me that testing against SC is just as, if not more important than testing against other illnesses.

I completely agree about the need to test all types of controls. However, we must be careful not to make the mistake of thinking or suggesting that people with MDD, or any other types of well-defined psychiatric illnesses, do not have something biologically wrong.

 

[lunarainbows]

@Ben H - it looks as though several of us are wondering why there were no control patients from other disease groups (e.g. MS, depression). I'm not able to read much at the moment but is it the case that the controls used were just healthy people, not deconditioned ones? If so, why were there no deconditioned controls?

My impression is that participation is easy from a subject's point of view (you just donate a bit of blood) and from the researcher's (you just stick the blood on the nanoneedle). So the research seems easy and cheap. Surely there are biobank blood samples for disease controls, at least, that would be easy to access?

As a patient I'd love to think that this is the 'holy grail' test for us but without comparison to deconditioned healthies and to other disease groups, the findings are far weaker than they might have been if what seems like easy steps had been taken.

So do you know why those steps weren't taken? Am I underestimating the difficulty of using such additional control groups? I'd really like to know. Are you able to feed that question back to Dr Davis?

Sorry if this has already been answered somewhere - as I said, I'm having trouble reading much.

I too would like to know this. (I’m new to this forum but decided to create an account for this..) I am very happy that a potential biomarker has been found, but i too wonder if the team had been able to do some of the things Sasha mentions, then Some of the “ scientists” from the SMC and elsewhere wouldn’t have had a foot to stand on, and it would’ve made the findings much much stronger. But maybe I too am underestimating the cost involved! and I really am grateful to the OMF for all they have done.

Actually, I see @Ben H isn't often on the forum - @JaimeS, is this something you can help with, please, in terms of passing on a message?

I can post Sashas message on Phoenix rising? Ben wrote a post there about this.

 

[Barry]

So surely the crucial thing is to compare with sedentary controls & major depressive disorder as well?

Yes. Because it is not sufficient to prove that pwME are not healthy ... the deconditioning lobby fully acknowledge they are not healthy. The crux of it is to prove pwME are not healthy and that any deconditioning is not the primary component of that poor health. Severe pwME are going to be deconditioned (how can they not be!), so any diagnostic marker needs to clearly discriminate between pwME (especially severe) and people who are solely deconditioned, due to other reasons for minimal activity.

 

[roller*]

what is the classic (medical) method to have this osmose stress measured ?

(so, for ppl without nano needle)

@Jonathan Edwards

walking at altitude ?

diving ?

 

[Sasha]

I too would like to know this. (I’m new to this forum but decided to create an account for this..) I am very happy that a potential biomarker has been found, but i too wonder if the team had been able to do some of the things Sasha mentions, then Some of the “ scientists” from the SMC and elsewhere wouldn’t have had a foot to stand on, and it would’ve made the findings much much stronger. But maybe I too am underestimating the cost involved! and I really am grateful to the OMF for all they have done.

I can post Sashas message on Phoenix rising? Ben wrote a post there about this.

Thanks for offering but I'd prefer my message not to be posted on the PR forum. If you'd like to mention it to Ben in a PM that would be fine but I don't want to put you to that trouble (and maybe Jaime will be able to respond here).

 

[Trish]

Hi @lunarainbows, welcome to the forum.

I can post Sashas message on Phoenix rising? Ben wrote a post there about this.

A reminder to everyone - it's not OK to copy posts from one forum to another without the poster's permission.

 

[Daisymay]

https://www.meassociation.org.uk/20...ic-fatigue-syndrome-identified-30-april-2019/

Ron Davis:

“We will continue this work. What we were trying to do at the very beginning was distinguish ME/CFS patients from health controls. And the reason for that is to say, if you get a signal – you are not healthy – and we thought that was probably the most important thing we could do first.”

“The second phase is to try and figure out how to diagnose it is ME/CFS and not some other related disease. That’s going to take some time as we have to look through a large number of other diseases, but that is proceeding at the moment.”

“In the future we will use this device for a number of things. We are already using it for doing other types of diagnostics that don’t involve cells but in fact involve molecules.”

 

[lunarainbows]

Hi,

Hi @lunarainbows, welcome to the forum.

A reminder to everyone - it's not OK to copy posts from one forum to another without the poster's permission.

Of course, that is why I asked first

Thanks for offering but I'd prefer my message not to be posted on the PR forum. If you'd like to mention it to Ben in a PM that would be fine but I don't want to put you to that trouble (and maybe Jaime will be able to respond here).

Ok I am happy to send him a private message is Jaime doesn’t respond here in a couple of days. Just let me know.

 

[wastwater]

Would be great if it could differentiate different conditions

 

[Patient4Life]

Whenever I've tried to use #mecfs on my Twitter account, it has not worked. I believe you have to be "someone" one Twitter first (I presume you have to have enough followers) before you can use that hashtag.

I don't think so. I had an account and started using it right away.

 

[rvallee]

At the risk of getting no likes, am I alone in thinking that SW comments were surprisingly sensible and even quite helpful?

Not particularly. He says that a test is not particularly relevant since it can be diagnosed without it, when that's literally the most important problem we have and however Wessely and his colleagues think they can diagnose ME patients, they cannot and do not, which makes his comment particularly absurd. It would be the biggest game-changer, as CT scans were for MS.

Add to that the callousness of pretending to be mad about "all in the mind" headlines when he and Sharpe have consistently been the source of those headlines for decades. He comes off his usual hubristic self who makes it all about himself, not a single thought about what this would mean for us.

Plus reversing cause and effect is literally how he has operated for decades so this comment is particularly ridiculous. I'm definitely not favoring Hanlon's razor here, he is his usual malicious self.

 

[rvallee]

I think it would be incredible news if this test was specific to only ME/CFS patients, but the skeptic in me reckons it won't be

Which would not be entirely bad, as it could bring in funding from other sources. If this test would light up other conditions, it's unlikely to be more than a small handful so that still speeds up the diagnostic process enormously.

Let's not lose sight of the fact that for all practical matters, we are still very much at the "nothing wrong with them, not even sick, not medically relevant" phase in the mind of the vast majority of physicians. Even if it's not specific, it simply removes the denial and would allow medicine to finally do something about it, as happened with MS following the development of the CT scan.

 

[rvallee]

Yes, he is right to say that the test results could be due to either the cause or consequence of whatever ME/CFS turns out to be

The same is true of MS. MRI confirms the sclerosis, which is damage of unknown origin to myelin sheath. We still don't know why and it did not matter once MS got removed from the blacklist. This is a non-argument, especially from Wessely, who has built his fictitious model on reversing cause and effect.

 

[rvallee]

Not to mention that I don't recall Sir Simon ever correcting or commenting similarly on the decades of headlines that misrepresented his work and claims in ways favourable to him.

He and Sharpe were the source of most headlines saying so. Wessely is perfectly fine with saying both and of course this is what he has promoted without evidence for decades. Which of course the SMC is well aware of as they have been vehicle to promote his belief system, making this comment particularly deceitful.

 

[ukxmrv]

Yes. Because it is not sufficient to prove that pwME are not healthy ... the deconditioning lobby fully acknowledge they are not healthy. The crux of it is to prove pwME are not healthy and that any deconditioning is not the primary component of that poor health. Severe pwME are going to be deconditioned (how can they not be!), so any diagnostic marker needs to clearly discriminate between pwME (especially severe) and people who are solely deconditioned, due to other reasons for minimal activity.

I am happy that the paper on this test has been published. Would disagree a little on the immediate need to discriminate between PWME and deconditioned otherwise healthy people.

Th Psych lobby is moving away from deconditioning to a sensitivity to exercise or central sensitivity model. Crawley spoke about this around the time of her TedX talk. We can't keep chasing whatever is their current pretend (non evidence) theory.

It's never been about the cause for these people though. It's the cure and everything we can put up to them as a cause will always be cured by a GET type activity program or CBT or whatever they want to pretend.

Having this test applied to deconditioned people or depressed people and found to be able to identify the PWME was never going to save us. The Psych lobby will change to whatever newly named group of their choice as being the one that it hasn't been tested against and to top it off regardless GET, GET, Activity, CBT is always going to need a £5 million, 10 year trial to show that it can cure it.

At the Gibson Inquiry the Psych lobby argued that GET and CBT could cure the gene expression Kerr published on. That taught me that whatever we find as abnormalities or a test or whatever is going to be disregarded.

I'd rather Ron went onto testing and finding a cure now and hopefully a cheap, easy and quick one.

 

[Octogenarian]

Interestingly, most of the results from moderate patients clustered towards the bottom (with the smaller separation from healthy controls (while all of the severe patients were near the top. Suggesting that severity affects results, though these are small samples.

Thank you for pointing this out! I am desperate for lab tests that separate severe patients from others. Exercise tests are of no use to severe patients.

 

[rvallee]

it would be good to check against MDD

To be fair, a biomarker for MDD would be an incredible breakthrough that would bring in major funding, although there is no reason it would have this effect, the similarities are superficial at best and focused entirely on a specific definition of fatigue as the sensation of tiredness without an actual physiological effect.

 

[rvallee]

One wonders where this rigour was when the SMC bigged up the Lightning Process.

It certainly would be fitting to demand back that the same rigour be applied in return to their own work. Which of course they won't because it can't stand scrutiny.

Paper thin glass walls, rocks, etc.

 

[Octogenarian]

@Jonathan Edwards
This seems to be the experimental setup - measure electrical AC impedance of samples across 30nm electrodes over 3 hours. Samples were tested within 5 hours of collection

Yes, that helps. Now what I need is an animated cartoon--complete with colorful characters and funny voices--that shows impedance traveling across the electrodes.






Hope that helps.

 

[Octogenarian]

...no one has a problem distinguishing ME patients from healthy controls

Not most friends? Some family members? Contemptuous doctors?