• 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.

Holgate, Komaroff, Mangan and Wessely write to Nature - Four views

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Source: Nature Reviews Neuroscience
Preprint
Date: July 27, 2011
URL: http://www.nature.com/nrn/journal/vaop/ncurrent/full/nrn3087.html


Chronic fatigue syndrome: understanding a complex illness
---------------------------------------------------------
Stephen T. Holgate, Anthony L. Komaroff, Dennis Mangan &
Simon Wessely


Abstract

Chronic fatigue syndrome (CFS) is a debilitating illness that affects
many people. It has been marred by controversy, from initial
scepticism in the medical community about the existence of the
condition itself to continuing disagreements - mainly between some
patient advocacy groups on one side, and researchers and physicians on
the other - about the name for the illness, its aetiology, its
pathophysiology and the effectiveness of the few currently available
treatments. The role of the CNS in the disease is central in many of
these discussions. Nature Reviews Neuroscience asked four scientists
involved in CFS research about their views on the condition, its
causes and the future of research aimed at improving our understanding
of this chronic illness.

--------
(c) 2011 Macmillan Publishers Limited


The preceding was a post on CO-CURE, from "Dr. Marc-Alexander Fluks" <fluks@COMBIDOM.COM>

This article requires a subscription or other permission to view.

Bye, Alex
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Disappointing. Apart from SH mentioning this:

Over a number of years the UK Medical Research Council (MRC) has received few applications for CFS/ME funding and these are mostly restricted to epidemiological studies and clinical trials of symptom treatment. This suggests a lack of research capacity in the field. Importantly, the MRC now has a dedicated budget for research into autonomic dysfunction, cognitive symptoms, fatigue, immune dysregulation, pain and sleep disorders in patients with CFS/ME. The proposal for such an initiative came from the interdisciplinary MRC CFS/ME Research Advisory Group that includes experts from a wide range of disciplines as well as input from the major UK-based CFS/ME patient charities.

None of the respondents mentioned the real reason why we lack answers - a lack of interest/research funding.

When you compare the economic costs (or levels of disability) of the disease vs research funding (using the NIH (USA) funding as a proxy), we find that CFS is under-researched by 20-50 times.
Crohn's disease has no specific biomarkers that have made it to clinical practise, yet it has a homogeneous patient group and has had over 10 times the funding over the last 10+ years.
 

Sean

Senior Member
Messages
7,378
It has been marred by controversy, from initial scepticism in the medical community about the existence of the condition itself to continuing disagreements - mainly between some patient advocacy groups on one side, and researchers and physicians on the other...

The longer this despicable piece of propaganda continues to be promoted, the longer and more destructive this controversy is going to be.
 

Enid

Senior Member
Messages
3,309
Location
UK
The name is ME now - the chronic appellation sounds a bit of a let off - sort of not yet discovered cause found multisystem pathologies (Viruses and Bacterial infections too) so in the meantime classed as just a "chronic" or for too many Docs - just tired all the time.
 
Messages
13,774
I think Holgate sounds okay. The whole article could have been a lot worse.

To me, this is one of the first times where I've seen Wessely mess up his PR. I think he comes across badly in a way a lot of doctors will notice, and I'm normally impressed by the way he manages people's perceptions of him and his work.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I'm disappointed by Nature. They are supposed to be the best or one of the best journals, aren't they? The statement that it's some patient advocacy groups on one side and researchers and physicians on the other side is incorrect and makes me wonder if their goal was to be objective. This sounds more like spin, which unfortunately seems to be be what the UK media mainly produces with regards to ME/CFS.

It might be true to some degree for the UK, but why don't you look outside of your country for a change? If you look at all the researchers and physicians who work with ME/CFS, especially outside of the UK, i'm pretty sure a large majority of them is with the patients, when it comes to what this illness is and what it's impact is.

I haven't read the article yet, btw, but this sentence was enough to have to comment.
 

oceanblue

Guest
Messages
1,383
Location
UK
Overall, I liked this article, and particularly the contributions from Stephen Holgate.

But yes, the really annoying part is the abstract
continuing disagreements - mainly between some
patient advocacy groups on one side, and researchers and physicians on
the other - about the name for the illness, its aetiology, its
pathophysiology and the effectiveness of the few currently available
treatments
which is not a good summary of the article at all. Simon Wessely unsurprisingly says this
there is probably a fairly broad consensus among clinicians and academics, with only a very small but vocal minority giving an impression of polarization within the field
but the other 3 contributors take a different view. I think it's just Nature giving the pot an unhelpful stir.

Stephen Holgate
A man who in my opinion does not get enough credit for his commitment and efforts to create some momentum in UK biomedical CFS research. For those that don't know, he's Chair of the MRC CFS/ME Research Advisory Group that recommended and got ring-fencing of MRC funds for biomedical research (though as he says the amount of money involved is currently tiny).

He seems to take the view that patients, not medics, are the victims of polarisation:
As a result, medical practitioners still view the diagnosis of CFS with great uncertainty and sometimes with outright denial. It is this view that creates a particularly polarized debate with and sometimes an angry response from patients. The division is especially great between patient groups and healthcare professionals who think that the syndrome has only psychological and psychosocial causes. This division is a main reason for patients receiving poor healthcare and for the erosion of patientmedical practitioner trust.

Anthony Komaroff said
We do not know the cause of CFS for the same reason that we do not know the cause of many neurologic diseases: we have not yet been clever enough to figure it out. If the word polarized means that opinions will remain unchanged regardless of the evidence, I would like to think that this is not the case

Holgate makes a number of good points and concludes by saying that the aim of his initiative is 'to improve the understanding of pahtophysioligcal mechanisms in CFS/ME' ultimately leadind to 'treatments that go beyond controlling symptoms'. We should encourage him.
 

Anne

Senior Member
Messages
295
I too think that Holgate made some really valid points, and that the article could have been a lot worse. However, I wish the authors (or rather, one of the three more relevant authors...) had brought up these two points:

1. The immense lack of funding for ME/CFS research. It's really no surprise that there hasn't yet been a real (confirmed) break-through in ME/CFS research, given that so little money is spent on the area. ME/CFS is on the bottom-10 list of diseases given funding by the NIH. MS afflicts half as many people as ME/CFS does, but recieves around 30 times more funding. Time and again interesting and valid pilot projects in ME/CFS research fail to be translated into large, confirmative studies, due to lack of funding.
(See http://forums.phoenixrising.me/content.php?421-M.A.D-in-May-5-Support-ME-CFS-Research)

2. The tradition within medical science to by default classify diseases with unknown causes as psychiatric, and then stick to that view until evidence of the opposite is absolutely overwhelming. This tradition of psychiatrization has been seen in asthma, MS, stomach ulcers (which were thought to be caused by stress, but in fact are usually caused by the bacteria Helicobacter pylori), and many more diseases. When is the medical community going to learn from previous mistakes and keep an open mind about (as of yet) unexplained symptoms?

I wish this had been hinted at in the article.
 

oceanblue

Guest
Messages
1,383
Location
UK
I too think that Holgate made some really valid points, and that the article could have been a lot worse. However, I wish the authors (or rather, one of the three more relevant authors...) had brought up these two points:

1. The immense lack of funding for ME/CFS research. It's really no surprise that there hasn't yet been a real (confirmed) break-through in ME/CFS research, given that so little money is spent on the area. ME/CFS is on the bottom-10 list of diseases given funding by the NIH. MS afflicts half as many people as ME/CFS does, but recieves around 30 times more funding. Time and again interesting and valid pilot projects in ME/CFS research fail to be translated into large, confirmative studies, due to lack of funding.
(See http://forums.phoenixrising.me/content.php?421-M.A.D-in-May-5-Support-ME-CFS-Research)

2. The tradition within medical science to by default classify diseases with unknown causes as psychiatric, and then stick to that view until evidence of the opposite is absolutely overwhelming. This tradition of psychiatrization has been seen in asthma, MS, stomach ulcers (which were thought to be caused by stress, but in fact are usually caused by the bacteria Helicobacter pylori), and many more diseases. When is the medical community going to learn from previous mistakes and keep an open mind about (as of yet) unexplained symptoms?

I wish this had been hinted at in the article.
I agree with you about underfunding and the lazy use of psychiatric explanations for unexplained illnesses (they'd used demons as the default explanation in years gone by). However, is there any evidence for this:
Time and again interesting and valid pilot projects in ME/CFS research fail to be translated into large, confirmative studies, due to lack of funding.
We desperately need large replication studies, but actually I'd have thought that once you have the interesting pilot, getting funding for a larger study should be a whole lot easier.
 

Sean

Senior Member
Messages
7,378
We desperately need large replication studies, but actually I'd have thought that once you have the interesting pilot, getting funding for a larger study should be a whole lot easier.

If only that were true.