Article: The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I

Article: The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 201

You can view the page at http://forums.phoenixrising.me/content.php?529-The-Biggest-Research-Funder-in-the-World-on-ME-CFS-The-NIH-on-ME-CFS-in-2012-Pt-I

 

Well as someone who could not touch a drop for ten years is there some big discovery in all of this.

It is complicated and there is a neurological connection somewhere - no giggles Cort - something infecting the whole of the nervous system (and many others)) Come on Cort - we have to do better than that.

I do think there is a discovery in all of this and it would be great if they looked at it more carefully. I think that would happen in a field like AIDS which gets mountains of money but not in CFS which can barely get major studies funded. Still, if it was and they could figure out what was going on - I would think it would lead to something really interesting.

 

I don't understand why this is such a big mystery to you all. It's the same mechanism that causes us to have problems with medicines, supplements, chemicals, cleaning products, etc., ie inability to detox normally, ie lack of glutathione in the liver, ie methylation cycle block.

My guess is that it is (must be) tied into the hypersensitivity problems that show up everywhere.

 

No question we have hypersensitivities that are both neurologic and biologic. But alcohol intolerance could be an interesting clue. So I just searched for info on alcohol metabolism, how it might relate with what is known about CFS, and got a lot of hits:

(1) Alcohol metabolism produces free radicals. So for one thing, mixing CFS with alcohol will lead to rapid antioxidant system depletion (glutathione, vitamins C, and B1/thiamine get depleted). Also, (2) alcohol is partly detoxified by the liver's P450 system (cytochrome P2E1), which is often broken in CFS. Then there is the fun fact that (3) alcohol consumption lowers ATP activity in the liver, not good for poor ATP recyclers like CFS patients. Let's see, that's three strikes. But wait, there's more, (4) one study showed that in a rat model, alcohol produces hypoxia in the liver. Given the cellular hypoxia known to be present in CFS, along with points 1-3 above, I think there are some pretty good explanations already for alcohol intolerance in CFS. Then there is the (5) simple carb issue... but if the intolerance were just about carbohydrate problems, then low-carb alcohol drinks would be better tolerated. I've not seen any data on that fifth point, but heard that 'it's the carbs' theorized by some patients.

 

Ha! Lots of interesting stuff.

No question we have hypersensitivities that are both neurologic and biologic. But alcohol intolerance could be an interesting clue. So I just searched for info on alcohol metabolism, how it might relate with what is known about CFS, and got a lot of hits:

(1) Alcohol metabolism produces free radicals. So for one thing, mixing CFS with alcohol will lead to rapid antioxidant system depletion (glutathione, vitamins C, and B1/thiamine get depleted). Also, (2) alcohol is partly detoxified by the liver's P450 system (cytochrome P2E1), which is often broken in CFS. Then there is the fun fact that (3) alcohol consumption lowers ATP activity in the liver, not good for poor ATP recyclers like CFS patients. Let's see, that's three strikes. But wait, there's more, (4) one study showed that in a rat model, alcohol produces hypoxia in the liver. Given the cellular hypoxia known to be present in CFS, along with points 1-3 above, I think there are some pretty good explanations already for alcohol intolerance in CFS. Then there is the (5) simple carb issue... but if the intolerance were just about carbohydrate problems, then low-carb alcohol drinks would be better tolerated. I've not seen any data on that fifth point, but heard that 'it's the carbs' theorized by some patients.

 

Thanks Cort.

I found it very illuminating. The news that NIH has now included ME alongside CFS brings them into line I suppose with the UK. This would have been 'good news' even last year for many I suspect in the USA but now of course with the ICCME it might be seen as rather dilutive seeing as both terms are now viewed synonymously.

Personally, I am still - as you know - rather confused about where the ICCME will come into play within the whole ME/CFS spectrum, but from what you have said above - the NIH at least has left the door open to more restrictive criteria which I think is a good indication for change.

The ICCME and other criteria - including the CCC to a lesser extent - will have to be 'approved' before they can be used in research let alone as a means of clinical diagnosis; and I look forward to hearing more about this process and any resulting debates. Indeed, given the changes above, I suspect it will be easier for the CCC to become an accepted 'norm' and harder for ICCME to establish (re-establish) ME as a distinct disease. But we shall have to wait and see.

I hope that the use of ME/CFS by the NIH doesn't mean that ME and CFS are now viewed as synonymous, Firestormm. ME/CFS is defined by the CCC, and one definition doesn't signify another. Obviously, CFS has already been defined in other publications, Fukuda being the one most referenced.

I hope too that the NIH nomenclature doesn't make it more difficult for the ICC to supplant the CCC. In Sweden, as you know, Dan Peterson called the CCC the most widely accepted clinical definition for our disease. It's used in most clinical trials now, favoured because it creates the purest cohort with the least psychiatic co-morbidity. In comparing the CCC with the ICC, Dr. Peterson himself seemed to favour the ICC:

They emphasize post-exertional neuroimmune exhaustion, neurological impairments, immune impairments, and problems with energy production and transport impairment. Now to patients none of this makes a whole lot of sense, but to physicians it does, because it's addressing the pathophysiology; its addressing why you have the symptoms that you have.... It's worth reading for clinicians because it does tend to emphasize the presumed pathogenesis underlying the symptoms (http://vimeo.com/30430680).

Of course, the ICC definition doesn't make ME and CFS synonymous either. The ICC authors recommend that patients diagnosed with ME be removed from the Reeves and NICE criteria for chronic fatigue syndrome. And Gordon Broderick has recently reiterated the urgent need to clarify this issue by distinguishing patients who meet the ICC criteria for ME from those that satisfy the broader and more inclusive Oxford, Reeves empirical criteria and the NICE criteria:

Unfortunately, the name CFS and its hybrids ME/CFS and CFS/ME have been used to refer to both ME and general chronic fatigue. The best way to end the resulting confusion is to only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease, which is consistent with the WHO ICD neurological classification (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).

Perhaps the NIH will begin to use ME when referring to the ICC and CFS when referring to Fukuda. ME/CFS will then be afforded its own transitional (rather than any pseudo-inclusive) significance.

 

In contrast to the CDC, which has asserted that myalgic encephalomyelitis and CFS are separate disorders, the NIH now believes they are essentially the same disorder and states that chronic fatigue syndrome (CFS) is sometimes referred to as myalgic encephalomyelitis (ME).

Wouldn't it have been more helpful for the NIH to state that chronic fatigue syndrome (CFS) is sometimes myalgic encephalomyelitis (ME)" rather than stating that it's sometimes referred to as myalgic encephalomyelitis (ME)?" If CFS is the more general term and ME (ICC) is more specific, then the NIH could indicate more clearly that ME is a specific form of CFS.

With reference to the CDC position, by the way, Dr. Unger isn't sure now that ME and CFS are separate disorders. I've posted on another thread her comments at the CFSAC meeting:

We are certainly aware of all of the new definitions and the strengths and the weaknesses. And I think it's been very helpful to get this new information and to consider what other domains and other measures should be included, and it will, you know. I've gotten lots of communication from people saying that CFS is different from ME; I've got people that insist that it's the same thing and synonyms. I think that there's disagreement, there's confusion, in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphened name, and I think until there's clarity what we're talking about, we can't give good guidance. So there has to be more consensus among the experts, and that's hopefully where we're starting with getting just our contract initially started. This will be the beginning of the dialogue. And there's legitimate points to be made on both sides. It's separate, it's together, it's different; I don't have the answer yet (http://www.youtube.com/watch?v=uB8xnB69KaE&feature=relmfu).

In correspondence with David Tuller, she wrote:

Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward (http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/).

In other words, what you write could make a difference.

 

I've always been a bit surprised that there hasn't been more interest in trying to understand the mechanism which leads to many of those with CFS responding poorly to alcohol.

Maybe the booze industry would fund some studies ... cure us, and they'll have more customers!

 

No question we have hypersensitivities that are both neurologic and biologic. But alcohol intolerance could be an interesting clue. So I just searched for info on alcohol metabolism, how it might relate with what is known about CFS, and got a lot of hits:

(1) Alcohol metabolism produces free radicals. So for one thing, mixing CFS with alcohol will lead to rapid antioxidant system depletion (glutathione, vitamins C, and B1/thiamine get depleted). Also, (2) alcohol is partly detoxified by the liver's P450 system (cytochrome P2E1), which is often broken in CFS. Then there is the fun fact that (3) alcohol consumption lowers ATP activity in the liver, not good for poor ATP recyclers like CFS patients. Let's see, that's three strikes. But wait, there's more, (4) one study showed that in a rat model, alcohol produces hypoxia in the liver. Given the cellular hypoxia known to be present in CFS, along with points 1-3 above, I think there are some pretty good explanations already for alcohol intolerance in CFS. Then there is the (5) simple carb issue... but if the intolerance were just about carbohydrate problems, then low-carb alcohol drinks would be better tolerated. I've not seen any data on that fifth point, but heard that 'it's the carbs' theorized by some patients.

arrggghhh! Why we get the hangover from hell.

 

Thing is I awake to the 'hangover from hell' every single morning (or after taking a 'nap'). And I don't drink as a rule. This has always been a problem for me - this suspected alcohol intolerance.

How does one define 'intolerance'? There have been times in my 12 year history since receiving this wonderful diagnosis - that I have been driven to drink in excess through despair.

But one of the great troubles is that I could never discern that I 'felt worse' because of the alcohol consumption or whether I 'felt worse' because - well - I have this condition.

Now I don't drink I still 'feel worse' on a regular basis. I mean it's a 'fluctuating condition' right? 'Exercise' makes me 'feel worse', viral infections make me 'feel worse' etc. etc.

I wouldn't want research (UK or elsewhere) to seemingly 'go off on a tangent' and in my 12 years I have had many a 'specialist' talk about various diets that might account for my 'intolerances' and personally speaking they proved an expensive waste.

Who's to say that someone who doesn't drink, when they do, experiences nothing more than a 'bad hangover' that feels worse because they aren't used to drink?

 

Thing is I awake to the 'hangover from hell' every single morning (or after taking a 'nap'). And I don't drink as a rule. This has always been a problem for me - this suspected alcohol intolerance.

How does one define 'intolerance'? There have been times in my 12 year history since receiving this wonderful diagnosis - that I have been driven to drink in excess through despair.

But one of the great troubles is that I could never discern that I 'felt worse' because of the alcohol consumption or whether I 'felt worse' because - well - I have this condition.

Now I don't drink I still 'feel worse' on a regular basis. I mean it's a 'fluctuating condition' right? 'Exercise' makes me 'feel worse', viral infections make me 'feel worse' etc. etc.

I wouldn't want research (UK or elsewhere) to seemingly 'go off on a tangent' and in my 12 years I have had many a 'specialist' talk about various diets that might account for my 'intolerances' and personally speaking they proved an expensive waste.

Who's to say that someone who doesn't drink, when they do, experiences nothing more than a 'bad hangover' that feels worse because they aren't used to drink?

This reminds me of the view one is sold in CBT/GET that the feelings we get from exercise are just the normal symptoms people get who haven't exercised for a while. The numerous studies which now show that something unusual does happen when we exercise.

Similarly I think the finding of alcohol intolerance is so consistent over so many people that it is hard to put down to other things. I do accept that people may believe they have other intolerances which may not be correct. But I don't believe so many people would stop drinking or not drink much if it was just a normal reaction to alcohol.

I didn't drink before getting the illness so can't comment myself.

 

Like Firestormm I have a 'hangover from hell' every morning. It's one of my main ME symptoms. Mostly it lasts all day, but sometimes, when I'm in a 'good' spell, it improves in the afternoon and evening. I occasionally have a couple of glasses of wine in the evening, but they don't make me feel worse - I get the 'hangover' anyway whether I've drunk alcohol the previous evening or not. When I'm in a better spell I can drink more than this and it doesn't make me feel worse.

So I wouldn't say I have alcohol intolerance. I have most other ME symptoms, but rarely have cognitive problems. Perhaps alcohol intolerance and cognitive problems are caused by a similar mechanism.

 

I get the 'hangover' anyway whether I've drunk alcohol the previous evening or not. When I'm in a better spell I can drink more than this and it doesn't make me feel worse.

So I wouldn't say I have alcohol intolerance. I have most other ME symptoms, but rarely have cognitive problems. Perhaps alcohol intolerance and cognitive problems are caused by a similar mechanism.

But you do seem to have some sort of intolerance in that you can drink more in a better spell - I think this correlation between level of illness and amount one can drink is interesting. I've heard other people say this, including a medical doctor with the illness (he wasn't able to drink for a while but as he improved he was then able to take one or two glasses). He also said he could drink one sort of drink but not another (think it was beer vs wine - I don't drink so wasn't paying much attention).

 

But you do seem to have some sort of intolerance in that you can drink more in a better spell - I think this correlation between level of illness and amount one can drink is interesting. I've heard other people say this, including a medical doctor with the illness (he wasn't able to drink for a while but as he improved he was then able to take one or two glasses). He also said he could drink one sort of drink but not another (think it was beer vs wine - I don't drink so wasn't paying much attention).

Yes perhaps that's so Dolphin, but I can drink more than a couple of glasses in a bad spell - I just don't, not because I get a worse hangover, but because almost everything I eat and drink when my ME is bad tastes nasty and makes me more nauseous. I have to have very small amounts of everything.

 

Thanks for this, Cort, very interesting.

I too have an alcohol intolerance, developed since I was ill. And 'hangover from hell' would be a reasonable description of how I feel most mornings (not having drunk the night before).