MRC awards £662 000 to St George's London to prove how ME is a functional disorder

[Sundancer]

I feel I need to declare that I'm not a CBT/GET supporter, but essentially the hypothesis of a "sickness response" gone wrong in the brain is quite similar as to the hypothesis of Gerard Pereira that was recently featured on Health Rising. According to Pereira, resetting the HPA axis by a drug that affects the stress receptors in the brain could potentially reverse CFS/ME quickly. So the hypothesis in both research approaches might be sound.

well, I'm not a CBT/GETsupporter either...

resetting the HPA axis by a drug that affects the stress receptors in the brain

yes, but in that case they should look at underlying physical vulnerabilities. Not focus on mental weaknesses.
Myhill says in her book that the underlying vulnerability is the endogeneous opoid system. I have been treated by a therapist that targeted this. He helped me from bedbound to housebound in a few months ( and then a virus came along, again getting my intestines totally out of whack, but that's another story)

If that hypothesis should be true, then we can better understand why so many people have need of a gluten and dairyfree diet. Why LDN is helping to diminish problems.

Looking at this as a ( former, out of job due to ME) childpsychologist, I know that children born from unduly stressed mothers have a higher risk to have ' behavioral problems'. To me behavioral problems equates with problems to regulate emotions, which equates to problems with the HPA axis ( yes building a row of domino's here)

The interaction between these kids and their caregivers is often described as 'unsafe attachment relation'. ( sorry, cannot find the english words for this, will look for it later)This does not mean that abuse or things like that are the problem. It's a relation that is founded on making the child as independent as (s)he can be.

This kind of rearing ( which is not rare) combined with a weak stress-system can, imho, lead to overtaxing of the HPA-axis. It leads to children/people who are ambitious, work hard, have the need to show that they are worthy ( to put it simple). This because their caregivers did put emphasis on being self-reliant. Kids get praise when they show how self-reliant they are.

But if the root of this problem is indeed in the endogenous opoid system, that system should be targeted.
( but, even when you target that, the problems with gut ( and a hoard of other things i think) are not solved, all the damage that has been done in all those years needs to be cleared up too...

My therapist said something like: when you're under stress ( whether psychological or physiological) the first line of defense is the EOS, when stress gets prolonged the HPA axis springs into action. If this is true, then with a compromised EOS, the HPA will be overtaxed without fail....

Earlier I have wondered how the stress from the mother during pregnancy so often is correlated with behavioral problems in the child. But reading some research on mice, where stressed mousemums indeed produced stressed kidmice. And a significant reduction of thingies in the endogeneous opoid system was found in the brains of the kids.

ah well, this is my pet theory
(would that my head functioned better, i think it mighty interesting.)

 

[Sundancer]

The problem with functional claims is that measurable organic damage is ignored. The hypothesis takes precedence over evidence. Now its laudable that they are looking for organic causation. However I would argue that if they do prove organic causation then its no longer a mental disorder. Its an own goal. What I hope I do not see, but I expect my hope will be dashed, is an organic link which will be claimed is evidence of mental causation.

I just saw some ( dutch) research which showed that people with ME and fibro have heightened levels of lactate in the spinal fluid. ( not significantly different between those groups) People with generalized anxiety disorder do not have heightened lactate-levels.

 

[alex3619]

People with generalized anxiety disorder do not have heightened lactate-levels.

Elevated lactate is generally a sign of poor mitochondrial function.

 

[Sundancer]

Elevated lactate is generally a sign of poor mitochondrial function.

oh, so that' s the reason I cannot put one foot in front of the other, why didn't you tell me before.


(But glad this research has been done, I wonder what percentage of ME-patients has been told they have anxiety-disorder. Whether generalized or some other one.)

 

[andyguitar]

Okay, so the research may not be ideal. But during the course of it they may find- by chance- something totally unexpected that proves useful.

 

[Sundancer]

Okay, so the research may not be ideal. But during the course of it they may find- by chance- something totally unexpected that proves useful.

yeah well...in general you first set up a hypothesis, and then you do your goddamn best to (dis)prove it, seeing if something useful comes out of it...is more like kindergarten.
We need firm biomedical research, not functional humbug.

just my humble opinion of course

 

[Sundancer]

and this is what Belijenberg said ( in a bit of context)

talking about Bleijenberg and his buddies.
In Holland fitnet is still to be found as therapy

https://www.cyberpoli.nl/cvs/interviews/elise

But the treatment works, and that has also been shown.
The number of patients you need to treat to make one better is just 1.7 in this disease. That is a very good effect.

what happens to the 0.7 kid? is that the one who gets hurt for life?

 

[msf]

To quote the O and A show, the NHS 'fucking suuuuuuck!'

 

[msf]

I think we're actually a country that we secretly believes in private health insurance, and we just use the NHS as cover for our atavistic beliefs. Otherwise I don't see why we would put up with a health service that is 2nd world standard in so many areas.

 

[msf]

Just in case anyone thought I was exaggerating: https://en.m.wikipedia.org/wiki/List_of_countries_by_quality_of_healthcare

 

[FMMM1]

Just in case anyone thought I was exaggerating: https://en.m.wikipedia.org/wiki/List_of_countries_by_quality_of_healthcare

I live in the UK. I support the NHS. I haven't checked the bangs for bucks but I've heard the NHS does very well by this measure. I recall hearing that Slovenia spends more on health (per person) than the UK; that gives some indication of the low level of finance for the NHS in the UK. The following extract is from
https://www.lshtm.ac.uk/newsevents/...etweencountriesgrowsdespiteglobalimprovements.


"While many countries in Western Europe alongside Canada, Japan and Australia were ranked in the top-performing group, the UK and USA were outpaced by their peers, ranking in the second-best group. The UK scored 84.6 in 2015 – an increase of 10.3 since 1990 – placing the UK in 30th worldwide.

Study co-author, Professor Martin McKee from the London School of Hygiene & Tropical Medicine, whose previous work helped inform the new index, said: “The UK has made consistent progress since 1990, but with a score of 85 it now lags behind many of its European neighbours. This includes Finland, Sweden, Spain (all 90) and Italy (89), all of which have health systems very similar to the British NHS and so are most directly comparable. The gap between what the UK achieves and what it would be expected to, given its level of development, is also wider than in other western European countries."

 

[FMMM1]

On Cort Johnson site you'll see an article on research to find an objective measure for fatigue.

Also on that site you'll find a review of Baraniuk's exercise-induced miRNA ME/Gulf War/Fibro study (2017) and details of Baraniuk's MRI exercise study which is currently recruiting people with ME.

Researchers in Cornell have run MRI studies showing elevated lactate/low glutathione (anti oxidant) in the brain.

I've only looked at this briefly but I'm not clear what it is they are doing. E.g. are they building on previous studies, such as those referred to above, or are they doing something new and if so what?

 

[pibee]

I feel I need to declare that I'm not a CBT/GET supporter, but essentially the hypothesis of a "sickness response" gone wrong in the brain is quite similar as to the hypothesis of Gerard Pereira that was recently featured on Health Rising. According to Pereira, resetting the HPA axis by a drug that affects the stress receptors in the brain could potentially reverse CFS/ME quickly. So the hypothesis in both research approaches might be sound.

+1

Also, I am still a bit confused what functional disorder stands for. The last paragraph of the Abstract is what I have in my mind as organic/physiological.

"We believe that fatigue in chronic fatigue syndrome may occur because of abnormal activation of a network of structures in the brain that are usually involved in signalling the presence of infection and inflammation in the body and which give rise to a common set of symptoms experienced by everyone (and indeed across species) when infection or inflammation occur (known as the "sickness response"). This sickness response is usually short-lived, but we believe that the system could be abnormally activated in people with chronic fatigue syndrome in the absence of any ongoing infection or inflammation in the body."

Feel like the term functional disorder is a word play and becoming more and more narrow as the science advances. At the end it will just merge with organic disorder of some kind, and the current smartass functional disorder promoters will be dead by then, unfortunately.

When I saw the words "functional disorder" I feared the worst. But it seems (if we ignore some remarks that are clearly uninformed) that it's not so bad. This sounds like they're researching it as a physical illness? If these structures in the brain are sending the wrong signals, isn't that the proof that it's NOT a functional disorder? Or am I being too lenient?

I think they dont even know what is exactly FD. They contradict themselves.

 

[andyguitar]

That they use the term "Sickness response" is to my mind a good sign. The Psycho lot would say "Sickness behaviour". I take "response" to mean response of the body/brain. Not the mind.

 

[Sundancer]

reading it..I'm not hopeful to be honest.

Non-epileptic attack disorder is a common cause of fit-like episodes which can be prolonged and very frequent. We know that these attacks are different from epilepsy, as there is no epileptic activity on brainwave (EEG) recordings performed during such attacks, but it is not known what is happening in the brain prior to and during attacks that could be responsible for the symptoms. We believe that changes in the brain's focus of attention in an abnormal way towards the body is an important part of triggering the attacks, and we will test this in our study.

I've an acquaintance with non-epileptic attacks. They have stopped now ( I think) but only because she does not work, reduces her stress as much as she can etcetera. To me her symptoms are clearly ME, but she herself does not want ( to believe) that ( yet)

the way she tells me about it is that some stressor ( can be physical overexerting) or psychological ( she once had such an attack when she had an unfriendly person from disability funds on the phone.

so, when these researcher say
changes in the brain's focus of attention in an abnormal way towards the body is an important part of triggering the attacks...


It's like saying t someone with POTS that when he/she would just not pay attention to those symptoms they would just disappear, in fact I have once read that some doctors think that POTS fainting and non-epileptic attacks are different outcomes of the same thing going wrong ( but what goes wrong, is carefully not told, because they do not know)

I'm not hopeful at all

 

[andyguitar]

Yes but they use the word 'Brain' not mind.

 

[Sundancer]

Yes but they use the word 'Brain' not mind.

ah yes, thank you.
that comes from reading in another language plus I heard Bleijenberg talking yesterday, on the telly, makes one sort of angry allover again...

 

[boolybooly]

More pyschologists projecting imaginary stereotypes.

What a waste of funding.

And no they wont ever give up because they are still being driven by the same careerist impulses to make money by hook or by crook that always drove them.

As a zoologist I dont believe in vermin because it is a projection and a stigma. But I do believe in parasites and that is exactly what these people are, parasites on a beaurocracy which uses academia to justify politically expedient policies.