CFS is a metabolic condition!

[Dr.Patient]

I know the fundamental abnormality is mitochondrial dysfunction. So, we need two things here 1) How to diagnose this mitochondrial dysfunction and 2) How to treat this mitochondrial dysfunction in all cells of the body. For the first one, I sent my ideas to Dr. Ron Davis, as you can see in the beginning of this thread. Let us hope they can come up with a genetic blood test for this. The second one, I'm not sure how to fix it. Maybe the diagnostic abnormalities in the mitochondria will show us some ways.

If you do look at some of these patients that got better after a few years like 4 or 7 etc..., you will see that, in some people, the body can repair itself slowly to normal- with really no radical treatments other than diet and pacing. (I am following these two). May be there are some clues here to be found in their bodies that can be made use of in other people- like studying the bodies of people who have HIV but never develop AIDS.

 

[knackers323]

Would metabolic "only" explain fatigue though?

My symptoms are viral and infectious (glands, swollen infected throat, flu like, sinus infections etc)

Does that fit into a metabolic model?

@Dr.Patient further to this, what is it you think may actually be wrong with the metabolic process?

and how do we fix it?

Also can I ask what your symptoms are?

Thanks

 

[daisybell]

@Dr.Patient
I am interested in your perspective on this. My experience has been that I definitely went through a period when my main symptom was feeling that my muscles could not make energy... I described it to a physio friend at the time as a mitochondrial problem, as that is how it felt.

However, in the years since then, other symptoms have raised their head, and that feeling of mitochondrial failure has taken a back seat. Interestingly, the mito issue was not the first symptom for me, but occurred about 4 years in.

IMO this is for most people an auto-immune problem, with its array of consequences...

 

[IreneF]

My understanding of metabolic disorders is that they are inborn errors of metabolism. I guess the most well-known would be phenylketonuria, in which the person cannot metabolize phenylalanine, and it accumulates in the body (as a ketone). It's due to a defective enzyme.

I don't see CFS/ME fitting into the model of a defective metabolic pathway. Also, wouldn't a lack of ATP cause cell death?

 

[alex3619]

Diabetes, both type 1 and type 2, are metabolic disorders, with the cause of type 1 being a viral infection or something else that damages the pancreas, whereas type 2 has varying causes, the most well studied being being obesity. Neither are inborn. There are definitely heritable risk factors for type 2 diabetes though. I am unsure about type 1.

Indeed I consider type 2 diabetes to be a syndrome. There are multiple layers of problems within it, all part of feedback loops. The low hanging fruit was obesity, but there are huge numbers of skinny type 2 diabetics.

 

[Dr.Patient]

Diabetes, both type 1 and type 2, are metabolic disorders, with the cause of type 1 being a viral infection or something else that damages the pancreas, whereas type 2 has varying causes, the most well studied being being obesity. Neither are inborn. There are definitely heritable risk factors for type 2 diabetes though. I am unsure about type 1.

Indeed I consider type 2 diabetes to be a syndrome. There are multiple layers of problems within it, all part of feedback loops. The low hanging fruit was obesity, but there are huge numbers of skinny type 2 diabetics.[/quote

Thank you Alex, this is a great example and brings out a lot of similarities between these conditions. Appreciate your knowledge and insight!

 

[Gingergrrl]

All treatments for CFS so far have been supportive- treat underlying conditions, viruses, etc. Those are all good only under two conditions- 1.) They do not worsen the CFS - either the treatment itself; or the moving of the body out for multiple visits to doctors and 2.) They actually help the CFS. In my opinion, a treatment is worth pursuing if the above conditions are satisfied.

@Dr.Patient I totally agree with you in theory, but in practice, we have no way of knowing if a treatment will help our CFS unless we try it which usually involves going to doctor's appts and taking a leap of faith. It seems like the alternative is giving up hope?

 

[lansbergen]

My theory is that CFS is a metabolic condition- not infectious, immunologic, neurologic, muscular, gastrointestinal etc.

Why would metabolic exclude infectious, immunologic, neurologic, muscular, gastrointestinal?

 

[EtherSpin]

I thought lots of folks with a CFS/ME diagnosis had occasional periods of better functioning.

nope. my best day in 2012-2014 would be worse than the worst day from 1981-2007. around 5% of my old energy pool and same deal for most CFS people I know

 

[IreneF]

I had a period of remission a year or two after my diagnosis, which lasted for a year or two. Then my symptoms came creeping back. I think this is fairly common and probably explains why some people feel they have recovered. It also correlates well with findings that certain cytokines vary depending upon how long the patient has been sick. My symptoms have also changed--e.g. I don't get sore throats or low-grade fevers anymore. Overall, I have gone downhill, to the point where I am housebound and pretty much pasted to the couch.

My feeling is that there is an underlying immune system problem, either autoimmune/autoinflammatory or an immunodeficiency.

 

[Dr.Patient]

@Dr.Patient I totally agree with you in theory, but in practice, we have no way of knowing if a treatment will help our CFS unless we try it which usually involves going to doctor's appts and taking a leap of faith. It seems like the alternative is giving up hope?

This is where people get caught in a cycle and keep running from pillar to post. If there was a cure for this condition, we wouldn't be having this website. There are no support groups for strep throat, for e.g.. In my opinion, try things, each time carefully balancing the possible benefit vs possible worsening. Or, once you've tried a certain treatment for some time, if it's not working, discard it.

As far as going to doctors, after a few months of doing that, most patients will realize that they cannot cure this condition.

There are things that can be done for this condition, and they will be figured out by the patient- such as their activity levels, diet, etc .

Do not give up hope, like I said earlier, nobody knows how your cfs will turn out.

 

[Dr.Patient]

Why would metabolic exclude infectious, immunologic, neurologic, muscular, gastrointestinal?

Infectious- there are patients who have this without any infectious trigger, no conclusive organisms have been identified, no antiinfectious drugs have helped this, no person to person transmission, either directly or by bugs, etc occurs.

Will address the other causes shortly.

 

[Sushi]

...As far as going to doctors, after a few months of doing that, most patients will realize that they cannot cure this condition.

There are things that can be done for this condition, and they will be figured out by the patient- such as their activity levels, diet, etc ...

There are quite a few (like maybe 20?! ) doctors who, after comprehensive testing to see what is actually going wrong in different systems, are seeing significant improvement in patients' symptoms.

I have been helped this way and although this route can be expensive, for me it has been worth it.

Best,
Sushi

 

[Dr.Patient]

There are quite a few (like maybe 20?! ) doctors who, after comprehensive testing to see what is actually going wrong in different systems, are seeing significant improvement in patients' symptoms.

I have been helped this way and although this route can be expensive, for me it has been worth it.

Best,
Sushi

That is great! There may be some fixable abnormalities found on testing, and fixing them does make a difference. What I meant was, doing those things will still not revert you to your pre-illness levels. This is where the problem lies.

 

[Sushi]

That is great! There may be some fixable abnormalities found on testing, and fixing them does make a difference. What I meant was, doing those things will still not revert you to your pre-illness levels. This is where the problem lies.

For patients who are young--say teens and twenties-- and have only been sick a short time (say 1 -2 years) some docs are getting complete "remissions." For the rest of us....some patients are getting back up to 75% of functionality, but most don't get that much back. And, of course, results with similar protocols have very individual patient results.

Still the research is encouraging and things may improve for us a lot in the next 5 years or so.

Best,
Sushi

 

[NK17]

Hello everybody,

As a physician and a patient of CFS for the last 3 years, I have an opportunity to view this from both sides. I made some interesting observations with my illness, and my training has helped me to look at it deeply.

My theory is that CFS is a metabolic condition- not infectious, immunologic, neurologic, muscular, gastrointestinal etc. There is a fundamental abnormality in energy production and distribution- and this is the defect present in ALL patients. Other symptoms, present in some and not others, are secondary to this. Here is an explanation of this theory, in a copy of the email I sent to Dr. Ron Davis, who heads the CFS research center at Stanford.

Hello Dr. Davis,

Thank you for starting the CFS research center at Stanford. As a 44-yr old family physician who has been suffering with this for 3 years, the last two of them homebound, I am aware of both sides of the coin.

I was excited to see that your center will be working on microarray analysis to look for gene expressions in the mitochondrial genomes as well. I had been wondering if such research was being done at all, and I'm thrilled to see that you will be. Two common themes here, lack of energy and maternal transmission, both point towards mitochondria, and I'm positive you will find the culprits here!

My theory is that CFS is a disease of metabolism- since during periods of good energy, all my other symptoms like brain fog, headache, muscle pains, tremors, constipation, chemical sensitivities, photo and phono phobia, depression, anxiety, all disappear. I feel completely normal! But when my energy levels are low, they all come back like drinking buddies (of fatigue).

There are clearly anomalies of energy production ( low energy is the common denominator in ALL patients, regardless of their other symptoms); and also energy distribution (like the occasional boosts in energy; and the delayed build up of energy after an activity).

My suggestion is if you could please look into mitochondrial gene expressions by microarrays during such episodes of low and 'normal' energy states, you will hit the motherload!

This is clearly a syndrome, and all other systems affected are secondary to this metabolic abnormality, and in my opinion, looking at other systems infectious, immunologic, neurologic, gastrointestinal, etc, will not be of substantial benefit.

Please know that I will be available to help in any way I can in the research of my disabling condition!

Thank you!

Hi Dr. Patient,

Your letter to Dr. Davis is interesting.

Are you aware that Dr. Davis has announced at the IAMECFS, this past March, that the first gene expression studies results from ME/CFS patients' blood show a chronic inflammatory state?

He has found hundreds of genes differentially expressed in ME/CFS patients than in controls.

So far this study has been run on 200 patients - from Dr. Kogelnik's clinic and probably from Dr. Montoya's clinic as well and 400 healthy controls.

When they further compare this genes signature to other diseases, they find a close match to 'systemic inflammatory syndrome' as well as a parasitic disorder caused by gram-negative bacteria and lentiviruses (which are retroviruses).

Many of the genes differentially expressed in the blood of ME/CFS patients are also expressed in Sjogren Syndrome and SLE (Systemic Lupus Erythematosus).

All this can certainly go hand in hand with a metabolic disturbance.

I'd like to add that many pathogens that have been associated with CCC and ICC diagnosed ME patients are certainly capable of creating havoc on genetically predisposed persons, in concert with environmental insults, which are very much present, in increasing quantities in our lives.

As a side note recently a paper has been published regarding GWI, which has found a clear link between organophosphates exposure and mitochondrial dysfunction.

 

[lansbergen]

Infectious- there are patients who have this without any infectious trigger, no conclusive organisms have been identified, no antiinfectious drugs have helped this, no person to person transmission, either directly or by bugs, etc occurs.

That does not exclude an infection.

There is no test and no treatment for the zoonose I suspect.

I use only one med, an immune modulator. It saved my live and slowly improves my health.

 

[lansbergen]

That does not exclude an infection.

There is no test and no treatment for the zoonose I suspect.

I use only one med, an immune modulator. It saved my live and slowly improves my health.

And there is no adaptive immune response with this infection.

 

[Dr.Patient]

Hi Dr. Patient,

Are you aware that Dr. Davis has announced at the IAMECFS, this past March, that the first gene expression studies results from ME/CFS patients' blood shows a chronic inflammatory state?

He has found hundreds of genes differentially expressed in ME/CFS patients than in controls.

So far this study has been run on 200 patients - from Dr. Kogelnik's clinic and probably from Dr. Montoya's clinic as well and 400 healthy controls.

When they further compare this genes signature to other diseases, they find a close match to 'systemic inflammatory syndrome' as well as a parasitic disorder caused by gram-negative bacteria and lentiviruses (which are retroviruses).

Many of the genes differentially expressed in the blood of ME/CFS patients are also expressed in Sjogren Syndrome and SLE (Systemic Lupus Erythematosus).

.

Thank you very much! I was not aware of those results. That is a good start! Chronic inflammation is really a common response of the body to any chronic insult. Let's hope that Dr. Davis' research will continue to show more specific abnormalities, pointing towards specific diagnostic tests like the ones we currently have for Sjogren's and Lupus.

 

[Gingergrrl]

This is where people get caught in a cycle and keep running from pillar to post. If there was a cure for this condition, we wouldn't be having this website. There are no support groups for strep throat, for e.g.. In my opinion, try things, each time carefully balancing the possible benefit vs possible worsening. Or, once you've tried a certain treatment for some time, if it's not working, discard it.

As far as going to doctors, after a few months of doing that, most patients will realize that they cannot cure this condition.

There are things that can be done for this condition, and they will be figured out by the patient- such as their activity levels, diet, etc .

Do not give up hope, like I said earlier, nobody knows how your cfs will turn out.

I have definitely realized that traditional medicine does not have the answers and cannot cure me. I am working with an ND who has run lots of tests on me and pursuing treatment from two directions- anti viral supplements (as I have a known anti viral trigger) and also trying to improve mitochondrial dysfunction. Working with her gives me hope that I am trying to improve my condition but believe me, there are days when all hope is gone.