• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Countrygirl

Senior Member
Messages
5,431
Location
UK
Dr JJ Edwards of St Georges has been awarded £662 000 to examine how ME can be viewed as a 'functional disorder'.

http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1

A Unified Mechanism for Functional Neurological Symptoms
Lead Research Organisation: St George's University of London
Department Name: Molecular & Clinical Sci Research Inst

Abstract

From the earliest medical records to the present day, doctors have separated out a group of patients from those with a typical "organic" cause for their physical symptoms. These patients have had many labels: "hysteria","conversion", "medically unexplained", "functional". Patients with functional symptoms are seen across primary care and all medical specialities, but are particularly common in neurological practice. Here they make up about 16% of those seen in neurology outpatient clinics, making functional neurological symptoms (FNS) one of the commonest diagnosis of neurology outpatients. People with these symptoms are, as a group, as disabled and experience as poor a quality of life as patients with Parkinson's disease or multiple sclerosis. Despite this, clinical services for such patients are poorly developed, research into causes of symptoms and treatment is very limited, and attitudes in society and within medicine to patients with functional symptoms are often poor.

With this work, we want to test a new theory for how functional symptoms can arise from the brain. One of the difficulties in understanding functional symptoms is that the brain and the rest of the nervous system appears to be intact, despite severe symptoms. Indeed in patients with some types of symptoms, for example people with limb weakness, it is possible to demonstrate on examination that the apparently weak limb can generate normal power, even though the patient cannot get this to happen him or herself. We believe it is vitally important for research and development of better diagnosis and treatment for us to understand how functional symptoms are produced by the brain. We have previously developed a theory that we believe provides a reasonable mechanism for how symptoms are produced. We have already gathered evidence that supports this theory in patients who have functional symptoms affecting movement (e.g. weakness, tremor) and sensation (e.g. numbness). We now want to move forward and test if this theory can also account for symptoms experienced by people with chronic fatigue syndrome and non-epileptic attack disorder.

Chronic fatigue syndrome is a disabling condition characterised by persistent fatigue in the absence of a clear medical cause. 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.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Talking to myself here, but yes, it is the study that we were told yesterday we should be grateful for! :cry:

oh my, will they never give up :depressed:

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.

maybe they could take a look at the results of the research on cytokines....
or a ton of other research.... same here in Holland, I just heard a bit of radio ( which was very good btw) wherein Bleijenberg again says that people do not want GET because they do not want to lose the stability they have, he thinks that weird ( or something like that...)

:bang-head:
 
Last edited:

Countrygirl

Senior Member
Messages
5,431
Location
UK
This is the reference:

I would like to reassure those affected that both the MRC and the National Institute for Health Research welcome high-quality applications for research into CFS/ME, including studies to investigate its biological causes, and it will come as welcome news that the MRC is currently funding a project to examine the relationship between abnormal brain structures and symptoms of CFS/ME.
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
oh my, will they never give up :depressed:



maybe they could take a look at the results of the research on cytokines....
or a ton of other research.... same here in Holland, I just heard a bit of radio ( which was very good btw) wherein Bleijenberg again says that people do not want GET because they do not want to lose the stability they have, he thinks that weird ( or something like that...)

:bang-head:

Lose the stability????? :confused:

Do you know what he means by that @Sundancer ?
 

JES

Senior Member
Messages
1,320
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.
 

Tally

Senior Member
Messages
367
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").

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?
 

hixxy

Senior Member
Messages
1,229
Location
Australia
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.

Depends on what is perpetuating the problem with the HPA axis and if the HPA axis is the sole problem (it could very well be secondary to something else). If faulty thought processes aren't perpetuating the disease then their hypothesis is trash.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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 would like to add one consideration though. It would be ironic if biomedical researchers were getting funding under functional claims. It would be using psychobabble funds to disprove psychobabble. However this claim leads me to expect this is not the case here -

We believe that this work can provide a bridge between these models by providing a biologically plausible mechanism for symptom production, but one which is not detached from psychological/cognitive mechanisms and aetiological risk factors.
 

Carl

Senior Member
Messages
362
Location
United Kingdom
Depends on what is perpetuating the problem with the HPA axis and if the HPA axis is the sole problem (it could very well be secondary to something else). If faulty thought processes aren't perpetuating the disease then their hypothesis is ttrash.
It's an infection by one of potentially hundreds of micro-organisms of the stomach! All highly resistant which no antibiotics can destroy. Helicobacter, the only recognised pathogenic stomach bacteria, is not alone and does not explain all the symptoms of the stomach such as unexplained cancer and stomach disturbances. Unfortunately all research is looking in the wrong place and failing to isolate the actual causative location.

BTW I worked this out in Jan 2014 and I have been looking for ways to destroy them. I have made some progress but because the causative micro-organisms can be so large in number it makes it difficult to find suitable efflux pump inhibitors and other things which can help beat them. Quorum Sensing Inhibitors I have covered and things to affect cell membranes to increase susceptibility to antimicrobials but there are still a few things that I have not yet worked out. I do not want to give them any further chance to adapt. I just want them destroyed and wiped out of existence.

These micro-organisms have developed antibiotic resistance like all have done due to people flushing antibiotic substances such as hand washes etc etc and not just pharma antibiotics which leave the body in urine etc and enter the environment to affect bacteria.

The psychology crowd have their fingers in everything. Foolishly thinking that the mind can influence things which the human body cannot affect such as biofilm protected infections.

I think that they are even involved with the ideas about Leaky Gut and that various useless substances such as glutamine can solve leaky gut. They cannot because Leaky Gut is caused by an infection which prevents healing. It is only by destroying the infection that Leaky Gut is solved. No Glutamine is needed to solve that because the body heals within minutes of the infection being destroyed. I have done this partly so I know it to be true. The big one, which affects CFS I have not yet beat so the real healing cannot take place.
 

Diwi9

Administrator
Messages
1,780
Location
USA
The study abstract leaves one wanting in terms of methodology. How exactly do they expect to show "sickness behavior" in the brain? Studies using fMRI are notoriously inept and un-replicable. It would be good to know what controls they plan on using, including what other patient groups for comparison.

If they want to look at ME/CFS brains, they may find differences...but proving causation with current technology is absurd. We simply do not know enough.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If they want to look at ME/CFS brains, they may find differences.
If they use cutting edge methods they will indeed find differences. Congratulations to them on a biomedical confirmation if this happens! Yet this does not prove causation. I suspect, for example, that fasciculus enlargement in ME is a consequence of ME, not a cause, though if it can be shown in patients before they get overt symptoms then the door is open again. This causation-association issue is horribly abused by some researchers. We will not know if this is the case here until we can read the final paper and additional documentation.

The pattern I am seeing is they see some association between a disease and something, such as cortisol. Now in cortisol we have prime examples of high and low states, in Cushing's and Addison's. I would suggest that if its causal in a direct sense then the same problems will be seen in one of those two diseases, depending on whether or not its high or low cortisol. Further, with respect to high cortisol they are probably getting the causation backward. Diseases and disease symptoms are drivers of cortisol. So its high. Disease causes increased cortisol in many cases. If the disease impacts the brain or long term cortisol synthesis, then it might be low. The way to track this is a prospective study, in which they show measurable cortisol changes before measurable disease changes. That at least allows for possible causation.
 
Last edited:

Sundancer

Senior Member
Messages
569
Location
Holland
Lose the stability????? :confused:

Do you know what he means by that @Sundancer ?

the interview has been transcripted, It's good really, you can find it here
https://translate.google.com/transl...,15700124,15700149,15700168,15700173,15700201


and this is what Belijenberg said ( in a bit of context)
Van Rijswijk: I talk to Lou Corsius and Jeroen Kortschot about chronic fatigue syndrome. We have just talked about what it is and the research that has been done about it which is not entirely right, and that we are actually in the middle of a huge discussion about chronic fatigue syndrome and treatments. A lot of treatments have been fired, but there are still psychologists who argue for behavioral therapy and one of them is psychologist Bleijenberg. We're going to listen to that.

Fragment Gijs Bleijenberg: You do not hear me say that this is the only and the best solution, but at the moment this is the only treatment that has shown effectiveness countless times. We visited people who were bedridden at home, we also offered treatment, but did not want treatment. I think because the fear of losing what they had now, namely a stable situation, and I can understand that too, to lose it.

Van Rijswijk: That it has worked countless times, he says. But also: fear of losing what they have. That seems like a heavy statement when I look at you?

Corsius: Yes, it is really incomprehensible that he dares to say this, dares to make such a comment.Because it is based on nothing. We see how it works with our own daughter. We have tried everything on activities, rehabilitation therapy, to make it better and then he still comes up with such a comment.And besides, he says: it has been demonstrated time after time. If you look at the Dutch research center for chronic fatigue, it shows that they have not been able to demonstrate the connection between the level of activity and fatigue.