Medical Research Council Announces ME/CFS Research Projects Worth 1.6m

[Enid]

One can well support the change brought about in the MRC in biomedical research (long overdue) - now find !

 

[Camilla]

STUDY 1:
But there may be no link between Sjorgen and ME/CFS. who is to say that the markers for fatigue will be the same? The worry is that someone really wants to study Sjorgens and has applied for ME/CFS money to do it.

That's what I thought!

 

[Dolphin]

I wonder what the chances are that money would be given to a study solely of people with ME/CFS because we have a symptom they have if there was a pot for another illness that had not got any biomedical research grants from the MRC before?

 

[oceanblue]

The sjogren study is the one that bothers me. Surely they will find a profile of sjogren's rather than fatigue? At least with the Hep C study they can profile +/- IFNa and correlate the difference with fatigue. Also, it's 500 patients so might be the lion's share of the money. Hope not.

ETA According to an ITV report the grant is just under 0.5m, a bit above average (of 330k each).

 

[Jenny]

Some positive coverage from an ITV regional news programme featuring Julia Newton, talking briefly about her grant, and a GP. Starts about 13 mins in.

http://www.itv.com/tynetees/fullprogramme/

Jenny

 

[currer]

To my mind, the cardinal feature of ME is that it develops in a PREVIOUSLY HEALTHY PERSON subsequent to some kind of immune challenge such as an infection or vaccination.

This means it is caused by something and then is perpetuated by something.

What?

We need studies looking at the immune response to infection and what triggers the abnormalities in the immune system that persist in ME.

We also need to ask -
Why do healthy young adults living in healthy surroundings become ill?

This is not an age group that SHOULD develop illness. Most diseases affect the young or old - vulnerable age groups.
ME sufferers are not living in unclean or disease ridden societies and are not malnourished.

ME is a very odd disease for this reason.

Sleep? Fatigue? Autonomic disturbance? WTF!

These are downstream effects, symptoms.
WE need to look at what is causing previously health people - ME is an ACQUIRED ILLNESS - to get sick.

YOU HAVE TO CLASSIFY your disease before you can study it in any meaningful way.

So what kind of disease is ME? Bloody hell - it is a fundamental and OBVIOUS question.

OH - sorry I forgot. We are now in the realm of diseases without causes.

Why dont they ask themselves -
Why has ME become more common in the last thirty years?
Is it associated with other pathologies? Like cancer?
Is it infectious/contagious? - Because then you would need to look for an agent.
Remember Dr Alter said that ME had the characteristics of an infectious disease.

Is it transmissible? Does it run in families? What age groups does it affect?

If there are abnormalities in the immune system and REALLY NO causative agent then you have to ask -
Why has this disease recently become more common?
Why do people respond nowadays to immune challenges with this novel disease?
What have we done to lead to this change?

All these questions will tell you what kind of disease ME is.
Then you will know how to frame your research to really find out what is going on.
But they dont want to know what is really going on - sorry!

They are straining every muscle not to rock the boat.
I have no time for this.

 

[Wonko]

rocking boats full of trojan gifthorses? could get messy.

 

[currer]

Incidentally in case people are forgetting - the person who asked the useful questions when researching ME - the ones that could lead to answers - was Dr Mikovits.

 

[Firestormm]

Some positive coverage from an ITV regional news programme featuring Julia Newton, talking briefly about her grant, and a GP. Starts about 13 mins in.

http://www.itv.com/tynetees/fullprogramme/

Jenny

One of the best interviews/features I have seen on British TV Jenny.

 

[Firestormm]

Incidentally in case people are forgetting - the person who asked the useful questions when researching ME - the ones that could lead to answers - was Dr Mikovits.

Multiple Sclerosis is another disease that can 'fit' with your profile above.

Do you therefore think Currer that this announcement of funding and these projects are a complete waste of time?

Are you not painting a rather 'flat earth' view. Kind of hoping we could start all over again?

It seems that for some (not necessarily yourself) that because this research did not mention 'retroviruses' it is worthless.

 

[Marco]

ME Research UK give a little more detail on the Julia Newton and Sjorgen's study which starts to make a little more sense :

2.Biological fingerprints of fatigue using whole blood gene expression profiling. Using primary Sjogrens syndrome (an autoimmune condition with several clinical features similar to ME/CFS) as a disease model, the researchers will undertake a comprehensive analysis of the immune system to identify biological fingerprints. Subsequently, they will explore whether these biomarkers are present in ME/CFS patients, and whether they have a role in improving diagnosis and treatment.

http://www.meresearch.org.uk/mrcaward.html

 

[currer]

Multiple sclerosis also looks like it is caused by an infectious agent.
People are still dying of multiple sclerosis because the underlying cause has not been identified.
Yes, Multiple sclerosis is also becoming increasingly common, for example there has been the recent emergence of MS in Guadeloupe and Martinique, following a return migration from France.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2325

On Jamie's last blog there was a link to research showing that MS can be successfully treated by antiretrovirals.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2325


MS was unknown in the Faroe Islands until the second world war when US troops were stationed there.
The clusters of MS cases exist on the sites of the troop's camps.
http://www.neurology.org/content/30/7_Part_2/61.short
http://treatingxmrv.blogspot.com/2011/12/experiments-in-vivo_18.html

Multiple Sclerosis is another disease that can 'fit' with your profile above.

Do you therefore think Currer that this announcement of funding and these projects are a complete waste of time?

Are you not painting a rather 'flat earth' view. Kind of hoping we could start all over again?

It seems that for some (not necessarily yourself) that because this research did not mention 'retroviruses' it is worthless.

 

[snowathlete]

Biological fingerprints of fatigue using whole blood gene expression profiling. Using primary Sjogrens syndrome (an autoimmune condition with several clinical features similar to ME/CFS) as a disease model, the researchers will undertake a comprehensive analysis of the immune system to identify biological fingerprints. Subsequently, they will explore whether these biomarkers are present in ME/CFS patients, and whether they have a role in improving diagnosis and treatment.

Im pleased to hear they are going to follow it up and look if people with ME/CFS have it too. But, the skeptic in me says they might already suspect that they wont, and thats the cheap part of the study. The expensive part is the bit on Sjogrens, and they will be happy with what they have found, regardless of whether ME/CFS matches in this regard.
Worse case scenario, the end result will be, people with ME/CFS must be making it up, because they dont have these fatigue markers - clearly a jump in logic, but i can see how some of the UK press would make that jump.

On the whole though, having thought about this for the last day, this is probably all a good thing, because nothing is nothing, but something, even if not that good, is more than nothing.

 

[Dolphin]

FWIW:

http://news.bbc.co.uk/2/hi/health/6334899.stm
Why exercise gets harder with age
Saturday, 10 February 2007

Dr Anne McArdle is quoted in the last four (short) paragraphs in this.

 

[Snow Leopard]

ME Research UK give a little more detail on the Julia Newton and Sjorgen's study which starts to make a little more sense :

2.Biological fingerprints of fatigue using whole blood gene expression profiling. Using primary Sjogrens syndrome (an autoimmune condition with several clinical features similar to ME/CFS) as a disease model, the researchers will undertake a comprehensive analysis of the immune system to identify biological fingerprints. Subsequently, they will explore whether these biomarkers are present in ME/CFS patients, and whether they have a role in improving diagnosis and treatment.

http://www.meresearch.org.uk/mrcaward.html

Thanks Marco. Given the Rituximab results, this might be a worthwhile hypothesis too!

Re: funding, this is still the start, funding levels (in terms of disease burden) are still not equitable to that of most other diseases in the UK and so we still need to push for more funding!

 

[biophile]

Better than nothing. 1.6m is chump change though, when taking societal burden into consideration this is the amount of funding that should be coming every week instead of being a once off crumb handed over after years of criticism and campaigning. Several decades of ME and roughly 25 years since Lake Tahoe, it is frustrating and disheartening to think of another 25 years of slow progress at the current rate, which could be condensed into 1 or 2 years with the appropriate funding and respect that is afforded to other diseases.

 

[Firestormm]

It is Biophile i.e. chump change considering... but consider the turn-around this represents from the MRC aka British Government if you like. I believe it was referred to as trying to turn a supertanker. Of course any future funding will I suppose depend on results from these research projects.

Although Prof. Holgate has indicated additional announcements to follow because of the unexpected but welcomed quality of applications. I did notice the MRC website had not been updated yesterday, so perhaps we will learn more about the composition and rationale for these awards once it has been. I did mention it to him at least and also mentioned the initial confusion over the Sjogern's Syndrome/CFS/ME project.

 

[Enid]

Thanks firestormm - nice to hear Prof Holgate really is addressing ME now. Quite a supertanker to turn.

 

[Mark]

Of course it's still an insultingly small 'research programme' with stacks of question marks over it, and in research terms a virtual irrelevance in comparison to the excellent research going on in Norway, the US, Australia and elsewhere. Nevertheless, as a change in emphasis and direction for the MRC's ME funding pot, it could be very significant. It's an improvement, and it's some return for all the hard campaigning work. The ME Association does deserve great credit for their work in shifting the supertanker a few degrees.

I have to highlight one point that has not been mentioned on this thread, though. This funding pot has been presented as a funding increase but that is a gross and blatant spin on the figures. The MRC's ME research pot has been roughly constant at between 750k - 1m for the last decade. In the last financial year, however, it was something like 85k. Averaged over last year and this year, this 1.6m is still at the same average level of around 850k per annum. In real terms, it is probably a small funding cut, but has been presented as if it were a 100% increase. That spin does not inspire confidence - it suggests that this research pot is mostly about being seen to respond to all the pressure.

If research funds were fair and proportionate, that research pot would be about one hundred times what it currently is. The research, if it were following the scientific progress elsewhere in the world, should be focusing primarily on the immunological aspects and on the classification and subsetting of the 'chronic fatigue' superset that the UK insists on placing around ME. It should be mandatory for all studies to subset their results by showing how many patients studied satisfied the International Consensus Criteria for ME, the CCC, the Fukuda criteria, and the UK's own Oxford/NICE/"chronic fatigue" criteria (which defines a group containing at least 10 times as many patients as the CCC).

So it's a very small, but possibly significant improvement in the research priorities, and the result of excellent work by the MEA, but this change of direction needs to be continued, the research programme deepened, and the funding pot increased enormously. And there will be no progress in understanding ME/CFS in the UK until the fundamental issue of the research criteria and the definitions of "ME/CFS" used for research is addressed.

If the UK's psychiatrists are allowed to continue to boggle the UK's media by referring to "Chronic Fatigue Syndrome" using their own home-spun definition of "chronic fatigue" that includes 1% of the population, by claiming that this condition is "also known as" ME, and by completely ignoring the Canadian Consensus Criteria and International Consensus Criteria for ME which define a disease affecting just 0.15% of the population, it doesn't matter what researchers study, they will continue to get confusing and obfuscating results. If we now freely admit we are studying "apples and oranges" and using definitions that lump 4 or 5 conditions together in one wastebasket, than surely the first logical step is to attempt to clarify the subsets in the patient population we are studying. At the very least, the UK's "CFS" studies should state how many of their patients satisfied the ICC or CCC criteria, and how the results found applied to those patients. Until that happens, the UK's games of smoke and mirrors and Russian Dolls will continue, and we will remain an international pariah for ME patients.

 

[Anne]

Of course it's still an insultingly small 'research programme' with stacks of question marks over it, and in research terms a virtual irrelevance in comparison to the excellent research going on in Norway, the US, Australia and elsewhere. Nevertheless, as a change in emphasis and direction for the MRC's ME funding pot, it could be very significant. It's an improvement, and it's some return for all the hard campaigning work. The ME Association does deserve great credit for their work in shifting the supertanker a few degrees.

I have to highlight one point that has not been mentioned on this thread, though. This funding pot has been presented as a funding increase but that is a gross and blatant spin on the figures. The MRC's ME research pot has been roughly constant at between 750k - 1m for the last decade. In the last financial year, however, it was something like 85k. Averaged over last year and this year, this 1.6m is still at the same average level of around 850k per annum. In real terms, it is probably a small funding cut, but has been presented as if it were a 100% increase. That spin does not inspire confidence - it suggests that this research pot is mostly about being seen to respond to all the pressure.

If research funds were fair and proportionate, that research pot would be about one hundred times what it currently is. The research, if it were following the scientific progress elsewhere in the world, should be focusing primarily on the immunological aspects and on the classification and subsetting of the 'chronic fatigue' superset that the UK insists on placing around ME. It should be mandatory for all studies to subset their results by showing how many patients studied satisfied the International Consensus Criteria for ME, the CCC, the Fukuda criteria, and the UK's own Oxford/NICE/"chronic fatigue" criteria (which defines a group containing at least 10 times as many patients as the CCC).

So it's a very small, but possibly significant improvement in the research priorities, and the result of excellent work by the MEA, but this change of direction needs to be continued, the research programme deepened, and the funding pot increased enormously. And there will be no progress in understanding ME/CFS in the UK until the fundamental issue of the research criteria and the definitions of "ME/CFS" used for research is addressed.

If the UK's psychiatrists are allowed to continue to boggle the UK's media by referring to "Chronic Fatigue Syndrome" using their own home-spun definition of "chronic fatigue" that includes 1% of the population, by claiming that this condition is "also known as" ME, and by completely ignoring the Canadian Consensus Criteria and International Consensus Criteria for ME which define a disease affecting just 0.15% of the population, it doesn't matter what researchers study, they will continue to get confusing and obfuscating results. If we now freely admit we are studying "apples and oranges" and using definitions that lump 4 or 5 conditions together in one wastebasket, than surely the first logical step is to attempt to clarify the subsets in the patient population we are studying. At the very least, the UK's "CFS" studies should state how many of their patients satisfied the ICC or CCC criteria, and how the results found applied to those patients. Until that happens, the UK's games of smoke and mirrors and Russian Dolls will continue, and we will remain an international pariah for ME patients.

I agree. The MEA seems to have done some great work, and I think the supertanker metaphor is very relevant.

And I too, believe all research should subset the patients into different criteria (for example always use and clearly document ICC, CCC and Fukuda-94) to make it clear which group the study results apply to. I recently read the excellent Norwegian book on ME/CFS by Jrgen Jelstad, in which it is made very clear just how much of the difficulties surrounding ME/CFS are due to the various criteria, and I thought about how much easier it would be if everyone would just clarify what they are talking about. For example:

"I study the Oxford illness, and my research indicates..."
"Oh, that's interesting. Myself, I study the Canada disease and in that area the research is showing..."

Wouldn't it have saved us a LOT of trouble?