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

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.

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.

 

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.

 

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.

 

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

(so, for ppl without nano needle)

@Jonathan Edwards

walking at altitude ?

diving ?

 

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).

 

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.”

 

Hi,

Of course, that is why I asked first

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.

 

Would be great if it could differentiate different conditions

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

Not most friends? Some family members? Contemptuous doctors?