Article: UK Govt Turns New Leaf ? (Why the UK Loves ME/CFS More (!) )

Article: UK Govt Turns New Leaf (Why the UK Loves ME/CFS More )

You can view the page at http://forums.phoenixrising.me/content.php?528-UK-Govt-Turns-New-Leaf-(Why-the-UK-Loves-ME-CFS-More-)

 

I apologize if this is the case, Cort. But I do find it misleading for you to purport to explain why the UK loves ME/CFS more (!) when they may not be studying ME/CFS (defined by the CCC) at all. In fact, they may not even be using a good definition of CFS.

Contrary to what you seem to suggest here, the CCC are used in Canada and in many other countries in studies with better designs, including those in the US. (Thanks for editing out some of the statements to which I've responded.)

I think the CCC have been used in a few studies (???) but only a few. Almost all research into ME/CFS including I believe all research funded by the NIH uses Fukuda. I was referring to govt funded research ie NIH funded research with the 'why the UK loves CFS more' statement. If the numbers are correct then the UK is clearly devoting a larger percentage of its budget to CFS than the US; hence the statement.

 

Hi Kermit Frogsquire

RE

You mean like the Norwegian Health authorities completely changed their focus overnight? I think the problem is people settling for this kind of nonsense, Cort. We are only disappointed because there are people like you, including the UK ME charities, that let the medical establishment continue to get away with less. If we all spoke together and demanded proper research, then that is exactly what we would get. It is only because the very people suppose to be representing patients with ME are celebrating these studies, studies that are a total rip off. That is to celebrate the abuse of patients with ME.

Here, here totally agree, whos side are these so called ME advocates on, obviously the wrong side, to say that the UK loves ME/CFS more on the basis of this waste of money is quite frankly highly offensive to large numbers of sick people who have been suffering this kind of abuse for decades. I would suggest that Cort might like to look up the meaning of the word Love in the dictionary.

If the MRC wants to show that it has turned over a new leaf, it can start by releasing the information on ME that they have decided to use the official secrets act to keep hidden from the world for the next 70 years. (talk about a lack of transparency)

All this money is going to be wasted, because the MRC refuses to acknowledge the existence of ME and instead is promoting that mixed cohorts of people with different diseases all falsely labelled CFS, are an independent disease. Nobody is going to find any useful information by studying mixed cohorts, they may as well spend the money on a different illness, Oh sorry they already know that and have dedicated some of the money to studying Sjogrens.

All this is, is some UK researchers getting money out of the UK government for more waste of time crap research on mixed cohorts that will help nobody.

And now unfortunately they will be able to say that the PR site backs what theyre doing!!! Thanks Cort great help, how about consulting with the people youre claiming to represent before congratulating their abusers!

All the best

Very different situation Frog if you think about it. The UK has a long history of research into ME/CFS which means that their policies are largely anchored into place while the Norway has done very little research which suggests that their policies can be changed more easily. In this case, as I remember, the IACFS/ME met with meet as a group with medical advisory members in Norway and were able to help convince them to change their policy. Can you imagine that the MRC would do the same? I don't.

Sorry to disappoint Kermit but I'll have to stick with my take on this. I don't believe that acknowledging the MRC when they do take steps in the right direction is synonymous with letting 'them get away with less'. For what its worth I think it supports them in taking more positive steps. I also think that not acknowledging positive steps can lead to them to not take more positive steps.

If the MRC refuses to acknowledge the existence of 'ME' as a separate disorder so does every other federal funding agency in the world. Again expecting them of all groups to do a complete turn around on that is unrealistic in my opinion. On the other hand, acknowledging them when they do take positive steps as they have in this case and at the same time asking for more - is a recipe for more positive steps

Mixed cohorts are a big problem! but they do not mean that no progress can be made - as the NK cell, metabolic exercise studies, blood volume studies, recent genetic studies and others have shown. Yes, it would be great if the UK adopted the CCC or ICC - I agree completely - but disregarding signs of progress from them because they haven't just doesn't work in my opinion.

 

Andrew, I wouldnt worry about the flu jab if I were you as the time elapsed is really too long.
Charles Shepherd has repeatedly said that about 10% of ME cases follow a vaccination trigger especially Hep. B vaccination. Hep. B causes prolonged immune activation. He publicised this as an interesting and relevant medical fact, but I think this connection could ring alarm bells in the pharmaceutical industry. This MAY be one reason we have had problems getting our iillness accepted and researched.
http://www.dailymail.co.uk/health/a...day-severe-reaction-cervical-cancer-jabs.html
We are discussing hypotheses here to do with research, it is not medical advice.

The PHANU group in Australia is looking at how vaccinations effect people with CFS. Their preliminary results from the Ottawa conference suggest that they perturb their immune systems quite a bit.

 

I'm not suggesting all CBT is useless Esther. I use a form of thought stopping myself for insomnia which is the very technique demonstrated on the BBC show yesterday.

The point is that this budget was supposedly ringfenced for biomedical research and this study appears to have slipped in because it will be using a drug. Of course if found to effectively help with daytime functioning then no doubt CBT will be touted as a superior intervention.

But insomnia does not cause ME/CFS and this study can only be about management - not understanding the underlying biomedical issues.

Does anyone know what drug Nutt is using in the study or more specfics on the study?

 

If the numbers are correct then the UK is clearly devoting a larger percentage of its budget to CFS than the US; hence the statement.

I think it's really important to be aware of the sleight of hand involved in the size of this funding pot. Parliamentary questions are regularly asked in order to get the numbers on this. The last annual budget (revealed by a question asked around this time last year) was 109k whereas it has previously been around 750k per annum (with a boost for the PACE trial in 2007/08. The figures for the last 10 years are detailed in a parliamentary answer here and since there was no funding at all from 2000-2003 (that's right, zero), the average per year works out at 444k. The 1.5m or 1.6m announcement was a rolling of 2 years worth of budget into one. It made it look like an increase, but it is still roughly the same level of funding it has been in recent years. We will see what the budget is for next year. If there isn't another funding round for another year or two, it's quite possible that what has actually happened may turn out to be an effective budget cut. In any case, the way the announcement has been spun to make it appear like a big increase and a new 1.5m pot is clearly misleading spin, coming after a year of 109k in funding, and this behaviour doesn't inspire much confidence in me.

I do appreciate your positivity on the change of direction Cort, and although this really is the tiniest of steps and there are some very serious questions to be asked about the details of the funding (the Sjogren's and Hepatitis studies, a probable disguised psych study, and more importantly all the important issues they are not addressing on the immunology side and the mixed cohorts), I do think you are right to say that this small but positive change of direction is to be welcomed. But that message of welcome has to be tempered with the recognition that this is just a beginning, it doesn't go anywhere near far enough, and it has to be continued, followed through, and extended considerably.

Finally, it's also important to realise that this change in direction for the MRC's ME research budget is the result of long, hard work over the last few years on the part of the ME Association, who have been closely involved in the setting of the parameters for this research budget. Although most of us would like to see far greater and faster change - and rightly so - the MEA do operate in the 'real world' here, and they deserve some praise for this achievement. However small it is in its own right, if it does represent a long-term change in direction then it could prove significant in the long run...time will tell...

 

I appreciate your balanced approach here Cort - and though long overdue this has has to be welcomed. I also bear in mind that advances for ME in Norway have much to do with the years of work by their ME Assoc in accepting this as a "discrete" and very real illness. We have so to speak a different landscape - resistant to acceptance as such by the early and continuing intervention of the psychiatric "clique" in denial holding up biomedical research all these years.

What are they cranking around about - it is clearly immunune - overdrive to autoimmune or persisting chronic infection (maybe into autoimmune too). Come on real research UK.

 

I think the CCC have been used in a few studies (???) but only a few. Almost all research into ME/CFS including I believe all research funded by the NIH uses Fukuda. I was referring to govt funded research ie NIH funded research with the 'why the UK loves CFS more' statement.

Please, Cort, don't use CFS and ME/CFS as if they were interchangeable when they're not. You reply, I was referring to govt funded research ie NIH funded research with the 'why the UK loves CFS more' statement. In fact, the statement in your title to which I responded is why the UK loves ME/CFS more. These are two different statements.

You say, Almost all research into ME/CFS including I believe all research funded by the NIH uses Fukuda. But research using Fukuda, by definition, isn't research into ME/CFS. It's research into CFS. ME/CFS research, by definition, uses the CCC.

You've changed your stance from virtually no one has used the CCC to I think the CCC have been used in a few studies (???) but only a few. (Are we getting closer on this issue?) The CCC have been used in research in the US, the UK, Canada, Australia and Norway sometimes as a corrective to the more general Fukuda definition, which is generally also used in the same studies. I had thought that the CCC were being used in the US by the Lights, the WPI, Dan Peterson, Ian Lipkin and the CFI. Correct me if I'm wrong. You no doubt have access to more sources of information, including full texts of studies, than I do.

From Amy Dockser Marcus, I gather that the CCC is one of the definitions being used in Ian Lipkin's NIH/NIAID study:

As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that includes everyones viewpoints.

The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection such as a sore throat or tender lymph nodes around the time they developed CFS. The thought is that if there is a viral link to CFS, its most likely to show up in those patients (http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/).

As one of the authors of the CCC and the ME-ICC, Nancy Klimas has been appointed Principal Investigator for Cohort Recruitment by the CFI. She is tasked with cohort selection for the Lipkin/Hornig's study. Again, I assume the CCC are being used:

The key to maximizing the outcomes of these tests is the criteria of the patients selected, according to Dr. Lipkin. He said this will give the greatest possibility of finding objective measures for monitoring and measuring the disease....

What we want to do is start with patients who have been characterized extensively using standardized criteria established by a group of widely respected clinical researchers, said Dr. Lipkin (http://trialx.com/curetalk/2011/11/...equencing-and-proteomics-to-hunt-cfs-viruses/).

Because cohort selection is critical to good research, I'm anxious that it not be reported in a cavalier fashion.

 

I really don't think trust will be restored until the MRC research grant process becomes completely open and transparent.

At a time when the UK political debate is increasingly absorbed with transparency in corporate governance and executive salaries it stikes me as a little bizarre that we (as patients and as members of the public) are required to second guess the details of a taxpayer funded research programme.

What possible contraints would there be on making publicy available details of all the applications for funding; the selection panel; selection criteria and outcomes, including ideally, reasons for projects being rejected. Didn't a MRC spokesperson recently deliver a lecture on how researchers need to structure their applications for funding? A fully transparent grant process would do no more to educate researchers as to what is likely to be a succesful grant application than any number of pep talks.

It would also do much to provide the much needed assurance that grants are allocated solely on the basis of scientific merit.

What the hell, while I'm in this parallel universe, why not asks patients what they would consider should be the research priorities

 

I appreciate your balanced approach here Cort - and though long overdue this has has to be welcomed. I also bear in mind that advances for ME in Norway have much to do with the years of work by their ME Assoc in accepting this as a "discrete" and very real illness. We have so to speak a different landscape - resistant to acceptance as such by the early and continuing intervention of the psychiatric "clique" in denial holding up biomedical research all these years.

What are they cranking around about - it is clearly immunune - overdrive to autoimmune or persisting chronic infection (maybe into autoimmune too). Come on real research UK.

Nice to hear Enid about the work the ME Association has done in Norway and kudo's to them.

 

The CCC is definitely showing up in more recent studies. I believe the CAA used it or a close approximation of it in their XMRV study and I wouldn't be surprised if they are using it in other studies or will be. We may be going through a period in which studies use both definitions (ie the Lights) and examine how each definition effects the results; that would be the best way to go I think because it would give them to validate how different CCC is vis a vis the Fukuda definition. You'll have to validate the new definition vs the old accepted definition in order to get traction.

It could also be that some discovery will come along and split CFS up regardless of the definition. The Lipkin pathogen has the ability the lay the groundwork for that; it will probably show that a subset of people with CFS have pathogens and a subset do not. Or it may be that some other biomarker will be found; the PHANU unit sounds pretty optimistic that they may be able to produce a biomarker within 5 years.

There's a couple of different ways then to get a more coherent patient group into studies. Hopefully at least one of them will happen over the years.

 

I really don't think trust will be restored until the MRC research grant process becomes completely open and transparent.

At a time when the UK political debate is increasingly absorbed with transparency in corporate governance and executive salaries it stikes me as a little bizarre that we (as patients and as members of the public) are required to second guess the details of a taxpayer funded research programme.

What possible contraints would there be on making publicy available details of all the applications for funding; the selection panel; selection criteria and outcomes, including ideally, reasons for projects being rejected. Didn't a MRC spokesperson recently deliver a lecture on how researchers need to structure their applications for funding? A fully transparent grant process would do no more to educate researchers as to what is likely to be a succesful grant application than any number of pep talks.

It would also do much to provide the much needed assurance that grants are allocated solely on the basis of scientific merit.

What the hell, while I'm in this parallel universe, why not asks patients what they would consider should be the research priorities

It appears that grant processes in the UK are more opague that in the US. We cannot find out who submitted what grants or why they were turned down. If we do an FOIA we can find out how many grants were submitted but we cannot find out what subjects they were on. We can find out who's sitting on the review panels though.

That's so regarding the NIH. The CDC uses an internal team effort; it appears to be impossible to get reasons why they are taking on one study vs another.

 

The CCC is definitely showing up in more recent studies. I believe the CAA used it or a close approximation of it in their XMRV study and I wouldn't be surprised if they are using it in other studies or will be. We may be going through a period in which studies use both definitions (ie the Lights) and examine how each definition effects the results; that would be the best way to go I think because it would give them to validate how different CCC is vis a vis the Fukuda definition. You'll have to validate the new definition vs the old accepted definition in order to get traction.

It could also be that some discovery will come along and split CFS up regardless of the definition. The Lipkin pathogen has the ability the lay the groundwork for that; it will probably show that a subset of people with CFS have pathogens and a subset do not. Or it may be that some other biomarker will be found; the PHANU unit sounds pretty optimistic that they may be able to produce a biomarker within 5 years.

There's a couple of different ways then to get a more coherent patient group into studies. Hopefully at least one of them will happen over the years.

Yes, it's always possible that some discovery will come along and split CFS up regardless of the definition. But over the decades, that hasn't happened using Fukuda.

It's more likely that a biomarker will be discovered with the help of a better definition. The definition is key. Ian Lipkin's comments bear repeating: The key to maximizing the outcomes of these tests is the criteria of the patients selected, according to Dr. Lipkin. He said this will give the greatest possibility of finding objective measures for monitoring and measuring the disease.

The ME-ICC experts agree in principle with Ian Lipkin. They introduce their ME criteria by criticizing the damaging effect of CFS definitions on research: Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds. And they conclude that the new criteria may assist in developing consistent biomarkers and further insights into into the mechanism and aetiology of myalgic encephalomyelitis (emphasis mine).

If insanity is defined as doing the same thing over and over again and expecting a different result, then using Fukuda over and over again and expecting to find a biomarker qualifies as insanity. Your depiction of intransigence abroad (the UK has a long history of research into ME/CFS [sic] which means that their policies are largely anchored into place) applies equally to the long history of research into CFS anchored in Fukuda.

Because the CCC definition (like the ICC) is more restrictive than Fukuda, it operates as a subset, rendering superfluous the method of validation you describe. Researchers need only require that patients meet both sets of criteria at entrance. In that way, Fukuda will be rendered obsolete without the trouble of examining how each definition affects the result. This is the ME/CFS approach that Ian Lipkin is using in the Columbia University-based study (adding in signs of infection at onset).

According to Dan Peterson, the CCC is now the most accepted clinical definition of our disease. Because it creates the purest cohort with the least psychiatic co-morbidity, it's used in most clinical trials now. Perhaps it will be replaced by the ICC for research purposes soon. The ICC has the advantage of having been designed by researchers for research, without any taint of sponsorship. It better describes the presumed pathogenesis underlying the symptoms, and it suggests subsets that may strengthen some research designs:

Classifying patients by subgroups to enable the comparison of patients within the diagnosis of ME may be helpful in some studies.
1 Onset: acute infectious or gradual.
2 Onset severity: may be a good predictor of severity in the chronic phase.
3 Symptom severity: mild, moderate, severe, very severe.
4 Criterial subgroups: neurological, immune, energy metabolism/transport or eclectic.

Getting more coherent patient groups into studies doesn't need to take years. Heaven knows, we deserve the benefit of optimized research results now.

 

In this case, as I remember, the IACFS/ME met with meet as a group with medical advisory members in Norway and were able to help convince them to change their policy. Can you imagine that the MRC would do the same? I don't.

Speaking of turning over new leaves, I'm curious to know when the meeting between the IACFS/ME and Norwegian medical advisory members took place and what Norwegian policy changed as a result.

The Norwegian Health Directorate has recently endorsed the new international diagnostic criteria for ME (http://translate.google.com/transla...r/cfs-me/diagnosekriterier/Sider/default.aspx). The IACFS/ME website hasn't yet listed the ME-ICC among its case definitions (http://www.iacfsme.org/CaseDefinitions/tabid/88/Default.aspx).

If the IACFS/ME could turn Norway around back then, do you suppose Norway could return the favour now?

 

It appears that grant processes in the UK are more opague that in the US. We cannot find out who submitted what grants or why they were turned down. If we do an FOIA we can find out how many grants were submitted but we cannot find out what subjects they were on. We can find out who's sitting on the review panels though.

That's disappointing.

Though in a recent study of the NHMRC grant process in Australia, found there was poor reliability of scoring by panel member and substantial 'randomness' in both grant approvals and membership of the grant approval process.

http://www.bmj.com/content/343/bmj.d4797.full

The above article also mentions some papers doing reviews on the NIH and possibly the UK research councils too.