UK parliamentary meeting (APPG on ME). The MRC's attitude seems hopeful.

[Enid]

Stay positve Bob - this is a breakthrough. (Thirtean years to see where we may be now).

 

[Persimmon]

Seems a big step forward for the Brits, and we should be sincerely thankful for that.

Having said this, I retain some reservations. For example, the Sjogren's study appears to be primarily that - a study focusing on Sjogren's - even if it uses ME/CFS as a control group etc etc. The ME Research UK website reports that almost 1m of the 1.65m of "ME/CFS grants" have gone toward the two University of Newcastle projects. One of these is the Sjogren's study. Maybe the bulk of that "almost 1m pounds" is for the Sjogren's study. It's not inconceivable that only about half of the headline figure of 1.65m pounds is actually going to projects focussed on ME/CFS.

 

[Wildcat]

This MRC funded study hopes to develop 'new therapies' in relation to sleep disturbances - putting the cart before the horse by positioning sleep disturbance as a cause rather than an effect of ME. Another study by a psychiatrist given the ring fenced MRC/ME funds:


Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt

Institution: Imperial College London

Summary: Researchers will study sleep disturbance a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

 

[Bob]

This MRC funded study hopes to develop 'new therapies' in relation to sleep disturbances - putting the cart before the horse by positioning sleep disturbance as a cause rather than an effect of ME. Another study by a psychiatrist given the ring fenced MRC/ME funds:


Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt

Institution: Imperial College London

Summary: Researchers will study sleep disturbance a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

So have you only just got around to looking at the what studies the MRC have actually funded?
I get the feeling that you hadn't actually looked at them before, and that your opinions have purely been based on the past behaviour of the MRC.

I notice that you've picked out what I think is the only bad study out of five.

I've just looked at them all again, and I'm even more impressed than I was before.
On the surface, without having looked at the methodology, four of them look really good to me, with the caveat of the unknown diagnostic criteria.

If anyone hasn't looked yet, then I do recommend having a look:
http://www.meassociation.org.uk/?p=9760

Four out of five of them all look like really impressive biomedical studies to me.
But if I'm missing something then please point it out.

Wildcat, I do understand if you have a very negative opinion about the MRC, because I share it.
But personally, I do think that it's helpful to acknowledge when they move in the right direction.
If we don't acknowledge the positives, then they won't know when they get things right.
I think it's just like how a child's good behaviour needs reinforcing by rewarding the child (and not just being told off for bad behaviour), or they won't know that they've behaved well and that good behaviour is appreciated. But that's just my opinion.

 

[Bob]

Here's the studies:

Identifying the biological fingerprints of fatigue
Principal investigator: Dr Wan Ng
Institution: Newcastle University
Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjgren syndrome a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological fingerprints of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.

Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment
Principal investigator: Professor Julia Newton
Institution: Newcastle University
Summary: Researchers will explore what causes dysfunction of the autonomic nervous system characterised by dizziness and light-headedness present in up to 90 per cent of CFS/ME sufferers. They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction. The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.

Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols
Principal investigator: Professor Anne McArdle
Institution: University of Liverpool (joint with the University of Leeds )
Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.

Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt
Institution: Imperial College London
Summary: Researchers will study sleep disturbance a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.

Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome
Principal investigator: Dr Carmine Pariante
Institution: Kings College London
Summary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.

 

[Wildcat]

.

Bob wrote to me "So have you only just got around to looking at the what studies the MRC have actually funded? I get the feeling that you hadn't actually looked at them before.."





I read the MRC proposals the minute they were online, Bob. I am not in the habit of commenting on subjects of which I am ignorant.




We've already gone round the mulberry bush with studies on 'CFS' and antidepressants - this study will use sleeping medication.

As I already said - its putting the cart before the horse to have the objective of "better therapies" to address sleep problems without addressing the central cause of the disease.





.

 

[Bob]

We've already gone round the mulberry bush with studies on 'CFS' and antidepressants - this study will use sleeping medication.
As I already said - its putting the cart before the horse to have the objective of "better therapies" to address sleep problems without addressing the central cause of the disease.

I totally agree with that Wildcat.

But the other four studies are exactly the sort of biomedical research we've been asking for. (Or am I missing something?)

 

[Wildcat]

.

These MRC studies do not equate with what Professor Holgate (MRC) promised us at the RSM conference of Summer 2008 - ie genomics, protonomics, virology... etc

.

At that Conference Professor Holgate of the MRC spoke to propose the sort of 'breakthrough' ME Research he thought should be done.
The RSM Conference, by the way, was exceptionally organised by the Royal Society of Medicine as a response to a widely supported Patient Protest, online, by post, and outside the building, in protest against the RSM holding a 'CFS' Conference totally dominated by Psychiatrists, and dedicated to psychiatry and 'CFS', ie 'you know who, et al'.


At the second RSM conference Professor Holgate made a big case for the use of what he termed "'omics" research in ME, and for getting ALL the experts together round the table to research a test and a cure for ME.


Now, all we have to show for the MRC 1.6 million is five non-exceptional studies which could have been funded by the previous MRC funding committees, and which in my opinion will not produce any breakthroughs.


We still need that breakthrough research.

.

 

[Bob]

There's a couple of pages devoted to the MRC's Prof Stephen Holgate, in the recent version of InterAction, Action for ME's member magazine. From what he says, he seems committed to investigating ME/CFS at a physiological level, as a biomedical disease, and also motivated to get further ME/CFS research carried out, and further structures set up to promote collaboration and research. He seems to have some well developed ideas about what he wants to see. Not a mention of CBT or psychobabble anywhere, but instead, he talks about: looking at subtypes; using "mathematical and statistical tools" to explore "clusters of clinical features"; and a "new approach for uncovering the abnormal cellular, immunological and biochemical pathways that lead to the individual disease subytpes."

To me, it seems like very slow but promising progress.

I've not seen an online copy of the article anywhere yet.


Edit:

Also, the MRC have added three further research areas that "require further proposals", to the previous list:
1. ME/CFS in children
2. Subphenotyping ME/CFS
3. Immune dysfunction.

The article refers to "ME/CFS" all the way through it, but I think that Action for ME might have played a role in formatting the article.

Applications for ME/CFS research can be made to any of the MRC's four review boards:
Infections and immunity board.
Molecular and cellular medicine board.
Neurosciences and mental health board.
Population and systems medicine board.

 

[Jenny]

Sorry Bob, I thought this was part of the online version of Holgate's Action for ME article that you were looking for.

I've deleted it and started a new thread on this.

Jenny

 

[Bob]

OK, thanks Jenny.. I've deleted my post as well.

 

[Bob]

The MRC seems to be continuing its investment into the biomedical nature of ME:

http://www.actionforme.org.uk/OneSt...earch-collaborative&NRCACHEHINT=NoModifyGuest

New UK M.E./CFS Research Collaborative

2 October
Action for M.E. Chief Executive Sonya Chowdhury met with Prof Stephen Holgate and representatives from other M.E. charities last week to begin setting up a new UK M.E./CFS Research Collaborative.
Building on the work done by the Medical Research Council’s Expert Group to highlight the need for biomedical M.E. research, the aim of the Collaborative is to:

• provide a mechanism for M.E. charities, researchers, clinicians and the pharmaceutical industry to work together in a more coordinated and collaborative way
• increase awareness of M.E. within the research community
• highlight priorities for research funding to assist funders such as the Medical Research Council
• potentially increase funding for M.E. research.

The terms of reference for the UK M.E./CFS Research Collaborative will be based on those used by the UK Respiratory Research Collaborative, of which Prof Holgate is a founder member.

 

[Enid]

Great news Bob, I've waited 12 years !. New CEO AFME hard at work now in a really constructive and collaborative way. All I can say is at last. ! . Sort of forget the past and move on.

 

[Bob]

Great news Bob, I've waited 12 years !. New CEO AFME hard at work now in a really constructive and collaborative way. All I can say is at last. !

Glad it gives you encouragement, Enid.

It's been in the pipeline for some time, and the ME Association are involved as well...
See the following link, under the heading "UK ME/CFS RESEARCH COLLABORATIVE":
http://www.meassociation.org.uk/?p=13038

 

[Enid]

What I find so marvellous is the new CEO (like a new broom) is bringing things (and people) together now. Very encouraging Bob and I much hope for you too though not easy when effective treatment is so much needed now.

 

[ukxmrv]

I can't get excited about AFME's involvement. It could be a disaster. What this could mean is that AFME (who supported the PACE trial) want to spread their tentacles even further on.

The BACME conferences are an example. AFME supports these conferences which are all psychobabble.

What this may mean is that AFME would like to get their pet psych researchers an even bigger cut of the MRC funding.

 

[ukxmrv]

We also had the news recently (on Facebook) that a UK immunologist who applied to the MRC for funding a Rituximab was turned down. He was quoted by a patient as saying that the MRC is still dominated by the psych lobby.

The proof is in the pudding as they say.

 

[alex3619]

We also had the news recently (on Facebook) that a UK immunologist who applied to the MRC for funding a Rituximab was turned down. He was quoted by a patient as saying that the MRC is still dominated by the psych lobby.

The proof is in the pudding as they say.

Hi ukxmrv,

Do you have a link for this? I have been trying to find a third source, with one source I do not recall, and one as a throw-away comment on a newspaper article. Is the immunologist named? Is there some way to confirm this. If its true then we need to do something - this is a very negative step in my view.

I do however think they will argue that since such trials are occuring anyway, why should they put limited resources on it. After all, if they other trials are positive then they can do something. However this may mean a five year delay in treatment in the UK, as they may feel it necessary to run yet another trial. Delay, delay, delay, and in the meantime people are sick and some die.

Bye, Alex

 

[ukxmrv]

Alex, it was on the MEA facebook page. Yes, the doctor was named. I'll post a link if I can find it but facebook is very hard to find things on once read!

 

[Enid]

Just to mention AfME were involved (to their embarrassment now) in some funding for PACE. There has been such an outcry, and "division" with the other charities and patients fighting this outrage that I think this is to be welcomed. New broom, more knowledgeable "partners" and push for biomedical research here. Let's hope they build on the volume of research (and researchers) findings now - a lot of "watchers" out there including us to make sure, but "proof in the pudding".

@ Bob 69 - The MRC and item 4 - Neurosciences and mental health - sneaky psychos again - perhaps learning Neurology (my brother a Prof) indeed may help them with real medicine. If it's immune dysfuntion etc. and we know it is best left to those specialists surely.