NIH CFS Steering Committee Wants Your Input!

Cort

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Mary requested that I post this. The Steering Committee is in charge of determining the subjects and reseachers presenting at the NIH State of the Knowledge Workshop in April. Note that this is other than XMRV - XMRV will be taken care of! We need to engage them on other fronts as well.

Hi everyone. I think by now you know about the NIH workshop in April to prime the pump for research funding on ME/CFS by educating other agencies within NIH and scientists who might be helpful - but none of these folks know a thing about our disease except what they've been reading lately about the retrovirus. Now that we have their attention, we'd like to share information about other biological abnormalities, problems, dilemmas, etc. The format is to have a panel chaired by someone knowledgeable about The Disease, with outside scientists and NIH decision makers on the panel. There will be a presentation, then brainstorming.

I think this is a good direction to go in. I am on the program committee representing patients, so I'd like your input. To spare myself total information overload, here are three questions. You can put answers here - I'm going to start a discussion topic - or write me privately. Then I'll do my best to compile the results and bring them to the committee (via email). Not much time - the program must be finished in two weeks. Here are the questions:

1. If there was only one topic covered, what would you want it to be (besides XMRV)?

2. We need experts on various aspects of The Disease. Dennis Mangan at NIH, who is running this show, has done a good job, but we could use some more. All suggestions welcomed.

3. If only one thing came out of this conference, what would you want it to be?
 

urbantravels

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1. BIOMARKERS. Without validated biomarkers, we don't have an "objective" test for our disease. With biomarkers, we would have much more effective tools for differential diagnosis; greater recognition for the physical "reality" of our disease; possibly less difficulty in obtaining proper medical treatment and disability benefits where warranted. Biomarkers should be quantitative as well as qualitative; with quantitative biomarkers there could be better research into the effectiveness of various treatments and a clearer path to FDA-approved medications for ME/CFS. We can identify biomarkers without answering the XMRV question. The answer to the XMRV question may be years in the future; we have no idea whether answering the XMRV question will even lead to a cure; but good solid work has already been done on biomarkers, which only needs to be built upon further, and could move us toward a better quality of life for CFS patients in the much nearer term.

2) Can you provide a list of what experts have already been assembled so that we don't duplicate efforts?

3) MONEY, of course. But targeted money; the conference could assist in identifying areas of greatest promise and areas where 'seed' money now could lead to larger projects later. Big amounts of money take more time to shake loose than smaller amounts; we need both, but the smaller amounts coming faster could certainly help move things forward.
 

Cort

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Remember this is OTHER than XMRV...

This is so easy for me -because one issue always pops out.


1. If there was ONE issue you would like NIH to address with regard to our disease, what would it be?


For me it's uncovering what is causing post-exertional malaise. For me this means digging into the processes occurring during exercise and in the post-exercise period to find out what drives my symptoms. I think one of your missions to wrap the researchers head around PEM - that it is not just fatigue, that it tends to be delayed, that it can last a long term and get them to do serious studies to elucidate what's going on - starting with focusing on the metabolic abnormalities done by the Pacific Lab and broadening them to include immune and other factors.

The problem with this and any research question is that there are almost certainly subsets and people who don't really experience this. It's critical for researchers to be able to define PEM - I would think perhaps by taking a close look at symptom patterns. I suspect there's a split in ME/CFS between people who experience muscle weakness and muscle pain after physical exertion. I experience fatigue associated with muscle pain; I think other people experience muscle weakness.

Imagine a study that looked at metabolic abnormalities during repeat exercise and HPA axis abnormalities (which have already been shown in one study), blood vessel functioning and blood flow patterns, oxidative stress (it's already high - since exercise induces free radical formation that it goes through the roof!), receptor upregulation (Lights), immune activity, etc and associating functioning with those parameters over the next week.

What is happening in the gut after exercise? Are those mucuosal barriers widening allowing toxins to enter the bloodstream. What about those cytokine patterns? Do they get more discombobulated? Does NK functioning poop out even more?

What happens with EBV and HHV6 activity? EBV is known to spike after stress but does it spike in CFS patients after exercise as well?

What would a fMRI show? I would love to see what a CFS patients brain looks like after exercise. Imagine a before and after picture of that. Does heart rate variability plummet even further indicating, paradoxically that SNS activity is increased right when patients need to be able to relax and heal. Speaking of the SNS what about the NPY connection? I KNOW in my heart of hearts :) that NPY levels MUST increase since too much exercise invariably leads to increased irritability and pain for me....And how does that relate to immune functioning? Since there is an NPY/Immune connection.

Several brain studies show that the brains of people with ME/CFS have trouble shutting themselves off - the brain remains in an excitable state for too long, if I remember correctly, after exercise. There are also studies apparently suggesting reduced 'planning' and muscle activation during exercise may be present...why would one not experience fatigue if the muscles are not being recruited to work properly??? Research into this area, which seemed so promising - has just disappeared in the last 5 years or so....

This is what they should be doing in my opinion........That should be the big study to elucidate what's going on in CFS. I think you should prod them to produce as comprehensive a study on PEM as possible. Focus on PEM - that is where the heart of this disorder lies for me.

2. If there was one clinician who could explain this disease to outsiders, who would you suggest?

Can't do just one. I would suggest Dr. Peterson - for the pathogen and immune side - he recently said 30% of patients probably will benefit from antivirals - so there is that subset that desperately needs to be elucidated, Dr. Klimas - is a great community and a very creative thinker, Dr. Bateman - is such a sober figure and communicates so well that I think researchers and other physicians listen well to her.

3. If one research project could be funded with regard to The Disease, what would you want?


See above!
- Show quoted text -
 

Cort

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With biomarkers, we would have much more effective tools for differential diagnosis;
I really like this idea - differential diagnosis - makes me think of identifying the subsets in this disorder - one of our many key goals. (we have so many goals!).

UrbanTravels - 3) MONEY, of course. But targeted money; the conference could assist in identifying areas of greatest promise and areas where 'seed' money now could lead to larger projects later. Big amounts of money take more time to shake loose than smaller amounts; we need both, but the smaller amounts coming faster could certainly help move things forward.
I hope this is what the Workshop will produce, that the subjects broached will be so interesting to the researchers attending = deliver so much promise - that there will be support for a large NIH grant (RFA) to that will increase funding for CFS greatly.
 
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YES Cort...PEM and everything that you mentioned there. Those would be some of my interests as well. My PEM isn't just muscle pain or fatigue it is a worsening of ALL of my symptoms. There have been times where I literally felt like I was going to die. I think getting to the bottom of PEM is extremely important for us.

I also agree with the recommendation of biomarkers being a point of interest.

In addition to the doctors already mentioned I will throw out there Dr. Klinghardt. I have heard a lot of good things about him. Also maybe Dr. Myhill. I am sure Dr. Cheney is already in the mix.
 

urbantravels

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"Differential diagnosis" would only mean distinguishing CFS from not-CFS, which we are unable to do now with adequate confidence. The best tool we currently have is strict application of the CCC criteria; I'd be over the moon if the NIH decided to adopt those for use in the US (maybe we should add that to the wish list.)

But biomarkers being able to contribute to differential diagnosis, and biomarkers being able to assist in identifying subtypes, would be two separate items on the list of "why we need biomarkers."
 

eric_s

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I don't mean to be a smarta;) but wouldn't it then not be a differential diagnosis anymore, if we had a biomarker?
I thought what we have to do now is a differential diagnosis because the diagnosis is basically given through ruling out other conditions that could produce the symptoms.
 

floydguy

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"Differential diagnosis" would only mean distinguishing CFS from not-CFS, which we are unable to do now with adequate confidence. The best tool we currently have is strict application of the CCC criteria; I'd be over the moon if the NIH decided to adopt those for use in the US (maybe we should add that to the wish list.)

But biomarkers being able to contribute to differential diagnosis, and biomarkers being able to assist in identifying subtypes, would be two separate items on the list of "why we need biomarkers."
I think we're better off if we can emphasize biomarkers like immune dysfunction. CCC is too complicated and the signature marker, PEM, cannot at this time be done in a regular doctor's office. I fear PEM is going to be way too complicated for it to be practical any time soon. I really, really would like to see the fatigue part de-emphasized as is the case with the original ME definition.
 
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Biomarkers, biomarkers, biomarkers - i couldn't agree more.
There have been several suggested by initial research - we need more studies to confirm, along with the money to fund them.

Because there are different subsets, maybe there could be a few different biomarker tests used - if a patient tests abnormally to 2 out of 4 tests for example then they have ME/CFS? (Just throwing stuff out here) Then the issue is speed, we need the tests now - the goal should be 2011! I'm sure that we will need to go back and refine the tests as further research develops over the years - but let's give physicians something to use now.

The second stage should be to disseminate new testing to all physicians and to get it written into the disability law immediately. Patients need to be diagnosed correctly now so that doctors don't continue to damage us by prescribing exercise, and patients need to get disability in a timely manner.

Godspeed Mary - I knwo you will do us proud :victory:
 

taniaaust1

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"1. If there was only one topic covered, what would you want it to be (besides XMRV)?
Sadly I personally think they need to go right back to the basics and start there as the basics hasnt had enough research done and till it is, there will always be those who give us a lot of crap about our illness.

They need studies from the basics up using the Canadian Consensus guidelines!!! (and not the crappy CFS/ME guidelines being used in the past which have trivalised our illness, those studies were all meaningless). Till this is done.. there will always be too many misleading other studies out there, too many myths etc etc. They need to put focus on the different subgroups of this illness separately, starting with studying the most severely affected (the home and bedbound with the most extensive range of symptoms).

I'd like to see a good study using CC CFS diagnostic guidelines on Rates of CC CFS within families, housemates etc (I was shocked to see one of the PR surveys in the past at how many of us have other family members affected... even if XMRV dont pan out, we still need good recongised info out there on possible transmission rates!). Also a study done using CC CFS defination on life expectancy would be good. Do those with CC CFS really die earlier then the norm or not??? if so, from what things? what cancers etc.

I'd like to see more studies in the central nervous system aspects of this disease.... I myself have POTS and have BP which spikes at times extremely high 160/138 when im standing but also low due to this disease 80/50 was a laying reading hospital took the other day for me. (I know there are others here with that same strange BP issue). This kind of issue hasnt been studied in CFS/ME thou I once read Dr David Bell article on CFS/ME and OI which mentioned it.

I actually partook in a CFS/ME study in Aust. (as far as i know it wasnt published) and my BP was so strange that my results fell into the automatic cutout area as they'd been expecting CFS/ME people to be showing low BP and not wildly swinging BP in regards to OI (In my early years of CFS/ME I did just have low BP but I think something in my system has now been damaged so my body doesnt regulate it OI wise and hence my strange BP). Please encourage a study into the various kinds of BP and OI issues in Canadian Consensus CFS/ME using 24 hr BP monitoring where its taken every half an hr while study participate charts what they are doing at time laying, standing, sitting, active etc.
Not enough doctors even CFS/ME specialists are aware that their CFS/ME patients probably also have POTS and that they should be trying to treat that too. More studies in that area would be great. So many of us would be a bit better off if we had this coexisting thing more recognised and treated!!

How about some studies done on the various experimental treatments for CFS/ME and if they help us some or not eg study into B12 injections as a type of therapy for us. Let's try to get away from GET and CBT being the only two recommended treatments for us, I want it recognised that there are other things which help some many of us.

I'd also like to see a study done methylation pathway issues and CFS/ME (I myself have a methylation pathway issue... so wonder did that make me more susceptable to getting CFS/ME then my 3 sisters who dont have this illness as they dont have the methylation pathway issue, which in my case a MTHFR polymorphism)

2. We need experts on various aspects of The Disease. Dennis Mangan at NIH, who is running this show, has done a good job, but we could use some more. All suggestions welcomed.
Maybe an expert on POTS would be a good expert to include as according to the CFIDS association of America, 70% of us have coexisting POTS. (Maybe Dr David Bell can give a talk on the various kinds of OI as per an article of his I saw some time ago).

3. If only one thing came out of this conference, what would you want it to be?
That it is time to do SERIOUS research into what is a SERIOUS illness!! and we need more funding put into this.
The various subgroups (different definations of CFS/ME) cannot and should not be mixed together but need to be studied separately. The most severe ones who often are discluded in studies (wrong! wrong! wrong!), are the ones which need and should be studied the most. Researchers need to be prepared to be going to the patients homes to have access to the sickest so they can be included.
 

Sean

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1. If there was ONE issue you would like NIH to address with regard to our disease, what would it be?

For me it's uncovering what is causing post-exertional malaise.
Agree with this. Though, of course, that does not mean other symptoms and signs should not be studied closely.
 

Cort

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Taniaust - They need studies from the basics up using the Canadian Consensus guidelines!!! (and not the crappy CFS/ME guidelines being used in the past which have trivalised our illness, those studies were all meaningless). Till this is done.. there will always be too many misleading other studies out there, too many myths etc etc. They need to put focus on the different subgroups of this illness separately, starting with studying the most severely affected (the home and bedbound with the most extensive range of symptoms).
I agree that having the research community get the centrality of PEM - and therefore using the Canadian Consensus Definition is critical. I also think they should emphasize the often delayed aspect of PEM or perhaps I should say the delayed peak of PEM - since I think really says something.
 
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I'd like the following things to be discussed:

The amount of funding spent on CFS research is far lower than other diseases with similar levels of disability and burden on society (especially economic costs). How can funding be increased to more equitable levels? How can the general perception of CFS be improved so that other researchers don't dismiss it due to old prejudices, or the assumption that it is too difficult for them to solve.

Subgrouping. Especially based on biomarkers, but even severity of PEM etc could be useful. For too long, researchers have tried to lump all patients together and then wonder why they get inconclusive results. The likelyhood is that a definition as broad as CFS has multiple causes and therefore subgrouping is the only way to move forward. I think we need to get over the taboo of subgrouping.
 
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1. Subgroups and biomarkers are paramount.

2. I would love to see Dr. Montoya present some of his research. And, of course, Dr. Bateman is always a hit in my book.
 

acer2000

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My advice... and it sounds basic, but it matters.

Figure out the etiology of CFS so we can get research into treatments. Without knowing the cause of the disease, its hard to work on curing it.

If they can figure out what the cause is, everything else becomes easier or irrelevant. That should be the focus.
 
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To even research etiology in CFS, you must first have biomarkers, otherwise you almost guarantee ambiguous results. We need to accept the importance of subgrouping based on biomarkers. We don't have the luxury of highly specific symptoms like other diseases, so this is the only way.

Yes, this means that some (who don't have said biomarkers) may 'miss out'. But we need to move away from symptomatic based diagnoses, otherwise we will never find answers.
 

richvank

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Hi, all.

In my experience over the past three years plus, the Health Diagnostics and Research Institute (formerly Vitamin Diagnostics) methylation pathways panel gives very good biomarkers for ME/CFS. It looks at the methylation cycle, the folate metabolism, and glutathione. ME/CFS shows up very well with these biomarkers, and when the methylation cycle is treated, these biomarkers improve, along with the symptoms. For more information, see www.cfsresearch.org (Click on CFS/M.E. and then on my name.)

Best regards,

Rich
 

slayadragon

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Remember this is OTHER than XMRV...

This is so easy for me -because one issue always pops out.


1. If there was ONE issue you would like NIH to address with regard to our disease, what would it be?


For me it's uncovering what is causing post-exertional malaise. For me this means digging into the processes occurring during exercise and in the post-exercise period to find out what drives my symptoms. I think one of your missions to wrap the researchers head around PEM - that it is not just fatigue, that it tends to be delayed, that it can last a long term and get them to do serious studies to elucidate what's going on - starting with focusing on the metabolic abnormalities done by the Pacific Lab and broadening them to include immune and other factors.

The problem with this and any research question is that there are almost certainly subsets and people who don't really experience this. It's critical for researchers to be able to define PEM - I would think perhaps by taking a close look at symptom patterns. I suspect there's a split in ME/CFS between people who experience muscle weakness and muscle pain after physical exertion. I experience fatigue associated with muscle pain; I think other people experience muscle weakness.

Imagine a study that looked at metabolic abnormalities during repeat exercise and HPA axis abnormalities (which have already been shown in one study), blood vessel functioning and blood flow patterns, oxidative stress (it's already high - since exercise induces free radical formation that it goes through the roof!), receptor upregulation (Lights), immune activity, etc and associating functioning with those parameters over the next week.

What is happening in the gut after exercise? Are those mucuosal barriers widening allowing toxins to enter the bloodstream. What about those cytokine patterns? Do they get more discombobulated? Does NK functioning poop out even more?

What happens with EBV and HHV6 activity? EBV is known to spike after stress but does it spike in CFS patients after exercise as well?

What would a fMRI show? I would love to see what a CFS patients brain looks like after exercise. Imagine a before and after picture of that. Does heart rate variability plummet even further indicating, paradoxically that SNS activity is increased right when patients need to be able to relax and heal. Speaking of the SNS what about the NPY connection? I KNOW in my heart of hearts :) that NPY levels MUST increase since too much exercise invariably leads to increased irritability and pain for me....And how does that relate to immune functioning? Since there is an NPY/Immune connection.

Several brain studies show that the brains of people with ME/CFS have trouble shutting themselves off - the brain remains in an excitable state for too long, if I remember correctly, after exercise. There are also studies apparently suggesting reduced 'planning' and muscle activation during exercise may be present...why would one not experience fatigue if the muscles are not being recruited to work properly??? Research into this area, which seemed so promising - has just disappeared in the last 5 years or so....

This is what they should be doing in my opinion........That should be the big study to elucidate what's going on in CFS. I think you should prod them to produce as comprehensive a study on PEM as possible. Focus on PEM - that is where the heart of this disorder lies for me.

***

Those people who do effective extreme mold/biotoxin avoidance all say that their PEM goes away as long as they're in a good place.

Ritchie Shoemaker discusses this phenomenon in his new book, "Surviving Mold."

No one else seems to have a good explanation for this phenomenon, that I've found.

I thus would like to pose the idea that looking at the role of toxic mold in ME/CFS might be a good starting point toward understanding the PEM phenomenon, and (hopefully) figuring out how to address it without people not having to be so extreme in their avoidance behaviors.

Of course, whether we should encourage people on the steering committee to bring up the idea of biotoxins to the NIH is another matter.

Toxic mold and (to a lesser extent) other biotoxins are a hugely charged political problem, since the measures that would be needed to remediate the problem would be astronomically expensive for the government, businesses and society as a whole. Insofar as ME/CFS and mold are seen to be connected, there may be even more squelching to the illness than is already the case.

(It's my belief that the government is already well aware of the mold/CFS connection and that this is a good part of why the illness has already been squelched, but that's just my own assessment.)

My best hope for this is that drug companies will develop drugs that will allow us to detoxify more easily. The two drugs that already have been developed that are related to this purpose (Metafolin and cholestyramine) already have been really helpful for some of us, and so I would have to think that with some effort, additional ones could be developed.

That's not going to happen unless toxicity is recognized as a part of this disease though.

Best, Lisa