Article: Breakthroughs Happen: A Model For Success in ME/CFS

You can view the page at http://www.forums.aboutmecfs.org/content.php?205-The-Way-Forward-for-ME-CFS

 

It's been interesting because I've been digging into literature about how to produce breakthroughs and they essentially did what the books were talking about;

1.Possibility - The originators created and made real the possibility - working together to biomarker for Alzheimers. Note that a biomarker is not just a diagnostic tool; because its a unique marker for a disorder it gives researchers a direct path to it's origin - so it's a huge focus for research, and, of course, for treatment.

2. Opportunity - As they unfolded the possibility it became clear that working together created an opportunity for everybody.

3. Complete the past and move forward - they 'completed the past' so to speak by ditching old belief systems that got in the way, working together to resolve any issues that remained, forgiving each other and then committing to the future.

4. They created a structure that made it all work - then the rest of it logically followed. It was the first 3 steps - the non-scientific steps - that were the most critical and most difficult.

 

Article on Co-Cure

I cant seem to open it?

The New York Times article was posted on Co-Cure a few days ago with a follow up by Tom Hennessy.

 

Well, if it's this tuesday, it's welcome, to say the least. I read the article, cause that what this thread is really about, and I can't think of anything that would be against this model of coperation in research efforts. Who wouldn't want this for ME/CFS? It still feels as rather utopic though, maybe because 'our' research community is smaller and (therefore?) the ego's and differences seem to be bigger. But why not give it a try? First create the infrastructure, than create the climate that's needed for such a shift in mentality. Who will be leading the way? If Suzanne Vernon can achieve this, it would be a small miracle.
!

I would say that creating the possibility and enrolling people in that alone can achieve miracles. Suzanne Vernon has thrown a possibility out into the CFS community. a network of researchers sharing data and results. The research projects already underway are an example of that - they are sharing data as they get it - raw data. Because they are already interwined they can use that data to alter each others experiments.

Usually you have a researcher doing a study for a couple of years and then publishing (another year). Then the research community reacts to it - gets more studies together and over time they either validate it, expand on it, etc.

In the collaborative scenario Dr. Vernon is producing because teams are sharing data as they get it - this process can take years off the time needed to make a breakthrough. Not only that but because they are talking with a variety of other teams - the potential impact of any one teams data is increased incredibly. In the CAA's case you have the potential of a brain researcher fine-tuning his study based on what the gut researcher is finding! If CFS is a multi-system disorder as all the evidence suggests it is (even if or after XMRV is proved correct) this is what we need.

The Research Network and BioBank are like adding turbochargers to what is, right now, a pretty sputtering car.

 

Great article Cort. Very eloquent and hopeful. I also thought of the CAA when I read the NY Times article. Now if we could only get players like the NIH, FDA and Big Pharma to lend a hand. Maybe we will have some drug trials happening as well. Hopefully XMRV will lead them in our direction.

Lynn

I agree but I think that what Big Pharma and the NIH are missing in CFS is a biomarker. If that's XMRV then so much the better - and we should know fairly soon. If it's something else, then it's something else. What they need is to find something unique to CFS whether it's a virus, a chemical, a network of receptors going crazy, a brain-gut - blood vessel interaction, a mitochondrial problem, whatever. (Interestingly Dr. Vernon's talk at the OFFER Conference is on biomarker's).

Once they have that the floodgates should open because they will finally have something concrete to work on. This is why standardizing the tests, the definition and the research protocols is so important - until you do that its hard to tell whats real. If you do that they you should be able to get consistent findings.

 

Hi Mark,

No, I am talking about experts in facilitating change based upon consensus building and analysis. This would also work in translational medicine under conditions where you want cooperation from divergent factions with different agendas, like what happened in the Alzheimers research. Where cooperation is already established and working, it wouldn't be of huge benefit. In other words, these are people with experience in organizational reform that is adapted to specific needs and not by rote.

So far as I know, this is not standard in science, just in the corporate world ... but if you want close ties with corporate, government, scientific and medical organizations, each with their own agendas and methods, then these corporate consultants could be of use.

Bye
Alex

Alex, are you talking about experts in promoting effective translational medicine specifically, or to scientific data-sharing and collaboration? Are the approaches you're talking about being applied in any other research or medical contexts?

 

This comment came in on Facebook from Wilhelmina Jenkins. Its from someone who's had CFS for a long time and who's daughter has it as well.

As someone who has lived through the days when researchers would go to meetings and refuse to speak, doctors would tell each patient something different behind closed doors, and patients would wait anxiously for the publication of promised papers that NEVER appeared, I could not agree with this article more. The only way to conquer this illness is with openness and communication, leaving the old "heroes and villains" approach behind and checking the egos at the door. I personally do not care who gets bragging rights; I care about conquering this illness before a third generation of my family has to face it.

 

they have been very good at sharing data in HIV research circles, a lot of people working together to solve a huge global problem. most of the HIV journal articles are free to read, too. cures and treatments come so much faster this way.

 

RE: "Let's not even get into the pathogens."

RE: "Let's not even get into the pathogens." in article: Breakthroughs Happen: A Model For Success in ME/CFS

Why not get into pathogens? Some of us are doing very well on therapies that treat & cure CFE symptoms as well as other chronic disease symptoms that incorporate antibiotics with immune boosting therapies, like the Marshall Protocol.

 

RE: "Let's not even get into the pathogens." in article: Breakthroughs Happen: A Model For Success in ME/CFS

Why not get into pathogens? Some of us are doing very well on therapies that treat & cure CFE symptoms as well as other chronic disease symptoms that incorporate antibiotics with immune boosting therapies, like the Marshall Protocol.

Glad to hear it. That sentence referred to the fact that some of the testing protocols for the commonly found pathogens in ME/CFS are controversial. Determining the 'right' method for testing pathogens and determining the gold standard if it is an active infection or not - will be very helpful but not necessarily easy.

 

I agree but I think that what Big Pharma and the NIH are missing in CFS is a biomarker. If that's XMRV then so much the better - and we should know fairly soon. If it's something else, then it's something else. What they need is to find something unique to CFS whether it's a virus, a chemical, a network of receptors going crazy, a brain-gut - blood vessel interaction, a mitochondrial problem, whatever. (Interestingly Dr. Vernon's talk at the OFFER Conference is on biomarker's).

Once they have that the floodgates should open because they will finally have something concrete to work on. This is why standardizing the tests, the definition and the research protocols is so important - until you do that its hard to tell whats real. If you do that they you should be able to get consistent findings.

Hi, Cort.

My candidate for the biomarker for CFS is the methylation pathways panel currently offered by the Health Diagnostics and Research Institute in New Jersey (formerly Vitamin Diagnostics, Inc.) I think this will define who has CFS and who doesn't, and it will also point to treatment needed to correct what appears to be the central biochemical issue in CFS, i.e. the combination of the partially blocked methylation cycle, the draining of folates out of the cells, and the depletion of glutathione.

Whatever the particular causes were in various cases of CFS, they all appear to lead to this combination.

Additional treatment may be needed as well, but treating this problem appears to be an essential part of the overall treatment.

I have no financial interest in this panel. A clinical study using this panel was described in my poster paper at the 2009 IACFS/ME conference in Reno. It can be found at www.cfsresearch.org.

Best regards,

Rich

 

Hey Rich, once we get our treatment review program and patient data program done we can get more patient data on it and that will help spread the word. Congratulations on that paper by the way.

 

Hey Rich, once we get our treatment review program and patient data program done we can get more patient data on it and that will help spread the word. Congratulations on that paper by the way.

Hi, Cort.

Thank you. I also appreciate your positive response to my suggestion of a candidate biomarker. I should mention that people with autism will also come up positive on this panel. It was actually developed for autism. My view is that autism and CFS are the same disorder from a biochemical standpoint. The obvious differences in symptoms reflect the age of onset. If onset occurred before the brain had completed most of its development, it will be autism. If the onset occurred later, it will be CFS. I would guess that this panel has been run more than a thousand times by now, so the lab should have a pretty big data base.

I think that the programs you have underway are very ambitious, and I wish you success in getting them done.

Best regards,

Rich

 

Nothing short of us moving (encouraging) science for all afflicted -WPI (stuff detractors). An illness we know in all its forms - we are on the way now.

 

Very interesting article, Cort. It's always good to see what we can learn from elsewhere, especially when we're stuck!

And yes, collaborative networks of reseachers and clinicians has to be key.

However, I would caution there is one big difference with Alzheimer's, which has a certainty of the pathology, marked by amyloid plaques and neurofibrallry tangles. The diagnosis problem for Alzheimer's is that these signs appear later in the illness and currently can only be identified by dissecting the brain. With ME/CFS, it's still not clear if the illness is caused by a single pathology or several different one with similar symptoms (to be clear, I'm not talking about psychosocial explanations here, but different biomedical ones).

Maybe XMRV or MLVs will provide a biomarker and clarity, but maybe they won't, in which case diagnosis - and case definition - become crtitical. When it comes to standardisation I suspect that this area should be the foundations.

 

Just great!

I am not ejoying my second round with this illness but it is getting to be exciting.

Keep up your work for us all Cort, you are an original.

Margaret

 

Article< Breakthroughs Happen: A Model for Success in ME/CFS

I just tried clicking on the link in the righthand sidebar, still locked out... then I logged out and the link had disappeared altogether.

But Alex can see it! It's just us, leaves! We're under some sort of curse!

Cort,
Great, just plain great piece. Keep up your hard work for us, we have more hope with each new development.

Margaret