CFS is a metabolic condition!

[Elph68]

Thank you for that. Yes, I am familiar with the criteria. I have undergone the CPET, and in my case, that precipitated another relapse lasting a year now. Hence the need for a noninvasive diagnostic test. Research should be looking at the common denominator in all these patients first and foremost, and not at 'accessory' symptoms, which are not present in all patients, whether for creating a working definition, or a diagnostic test. In my opinion, even the treatment of all the symptoms of this condition will come about by treating the basic problem.

I am not stating that cfs is only a metabolic condition. The fundamental abnormality is metabolic, the cellular energy dysfunction. When it permeates other systems, these other symptoms appear. There are patients with different systems affected. There were periods in my life when I just had disabling fatigue, with none of the other symptoms.

Yes, I am standing in opposition to the very medical community I belong to. They,'ve got it wrong!

Dr Myhill and her team have a paper on this ... From memory they have already shown that the mitochondria fails causing cellular energy loss .....

Just seems like you may be asking these guys to cover old ground .....

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

Cheers.

 

[GcMAF Australia]

Some GPs are finding that CFS patients mostly have Lyme Disease

 

[Aerose91]

There are clearly anomalies of energy production ( low energy is the common denominator in ALL patients, regardless of their other symptoms)

I would have to respectfully disagree with this. I appreciate your stance on the condition given the fact that it coincides with your training. However, the first year I had this I had perfectly normal energy but massive, massive brain abnormalities akin to dementia and Alzheimer's as well as psychosis. Now after a couple years I still have these brain problems but have the fatigue and muscle weakness etc. as well. There are occasional days when my energy is decent but it has no relation to my brain fuction, my brain function never gets even 1% better despite all factors, including my energy levels.

 

[Dr.Patient]

Dr Myhill and her team have a paper on this ... From memory they have already shown that the mitochondria fails causing cellular energy loss .....

Just seems like you may be asking these guys to cover old ground .....

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

Cheers.

Thank you for this! I was in the middle of reading the three papers of Dr.Myhill when your msg came. It seems to make sense, but why is the ATP profile not offered routinely to patients in the US?

 

[Gingergrrl]

Thank you for this! I was in the middle of reading the three papers of Dr.Myhill when your msg came. It seems to make sense, but why is the ATP profile not offered routinely to patients in the US?

@Dr.Patient I brought a copy of Dr Myhill's research to my cardiologist and she was completely unfamiliar with it or how it applied to my tachycardia and symptoms. However my ND ordered a mitochondria test kit that we are going to do once it arrives. It is not the test from Dr. Myhill but I am guessing it is something similar?

 

[Dr.Patient]

@Dr.Patient I brought a copy of Dr Myhill's research to my cardiologist and she was completely unfamiliar with it or how it applied to my tachycardia and symptoms. However my ND ordered a mitochondria test kit that we are going to do once it arrives. It is not the test from Dr. Myhill but I am guessing it is something similar?

I don't know. What lab is your blood being sent to?

 

[Dr.Patient]

Some GPs are finding that CFS patients mostly have Lyme Disease

I wonder how many patients have had significant improvement in their fatigue after this Lyme was treated?

 

[Gingergrrl]

I don't know. What lab is your blood being sent to?

I don't know any details about the test because she ordered the kit for me and it has not arrived yet. I am assuming it is a blood test and will post more when I know.

 

[GcMAF Australia]

I wonder how many patients have had significant improvement in their fatigue after this Lyme was treated?

I know of quite a few
The figures that I am getting is about 50%, but it is highly individual.
I know of two people who have got out of their wheelchairs, and others who have made good improvements

 

[GcMAF Australia]

I would have to respectfully disagree with this. I appreciate your stance on the condition given the fact that it coincides with your training. However, the first year I had this I had perfectly normal energy but massive, massive brain abnormalities akin to dementia and Alzheimer's as well as psychosis. Now after a couple years I still have these brain problems but have the fatigue and muscle weakness etc. as well. There are occasional days when my energy is decent but it has no relation to my brain fuction, my brain function never gets even 1% better despite all factors, including my energy levels.

It is now being found that Borrelia - Lyme Disease is found in most Alzheimer's brains.
I certainly would be following up on the possibilty of Lyme infection.
Kind regards a& hope this helps

 

[heapsreal]

@GcMAF Australia have you heard anything from a recent Lyme study done by some Sydney researchers end of last year. They took people from all over the country.

These people you heard of improving, what type of abx used or other treatments were used??

 

[GcMAF Australia]

@GcMAF Australia have you heard anything from a recent Lyme study done by some Sydney researchers end of last year. They took people from all over the country.

These people you heard of improving, what type of abx used or other treatments were used??

yes i think they have done 1 run.
they are now apparently retesting (for some reason)
The Australian Biologics are getting at least 40% positives in their tests. This is pcr!!! and so they really are positive.
Dr Durham in Wa has nearly all his CFS patients are Lyme positive , around 200.
1 person had antibiotics
another went to Germany Abx, HBOT etc etc
some high salt & vitamin C
You can try the Lyme facebook sites
many families have several lyme dx, expect 800,000 australians to have it, probably lots more
for more infopm me

 

[Elph68]

Thank you for this! I was in the middle of reading the three papers of Dr.Myhill when your msg came. It seems to make sense, but why is the ATP profile not offered routinely to patients in the US?

Hi Dr. There is no money in it for the drug companies .... That is why ....

The same reason here in Australia, Bioscreen at the Melbourne University is seen as 'alternative' or quackery, yet Dr Butt is arguably the world leader in gut microbiome research ....

The same reason why Doctors here send us (me in particular) to psychologists .... That is when I am not being sued for defamation

You may find it useful to look at hydrogen sulphide poisoning and catalase deficiency ... You may be surprised at what you find .... Both hydrogen Sulphide and Hydrogen Peroxide overdoses cause the mitochondria to dysfunction .... There are even MSDS's available which shows symptoms according to level of exposure ....

Hydrogen sulphide produced by pathogenic strains of normal flora that enters directly into the blood stream ....

The undetectable infection .....

 

[Hip]

There are many patients who have a slow onset CFS unrelated to any event.

My case of ME/CFS was was slow onset, getting slowly worse over a period of around 4 years. However, this period began with a viral infection that I caught (symptomatically diagnosed as an enterovirus), and this viral infection very quickly (within months) precipitated severe anxiety disorder in me, and severe anhedonic depression, so it was very clear that this virus I caught affects the brain. But the ME/CFS I believe this virus precipitated in me came much more slowly, getting worse gradually over 4 years.

Interestingly, this virus also spread to around 30 friends and family, and precipitated similar mental symptoms of anxiety and anhedonia in some other people who caught it too, and nearly everyone who caught it developed what you might term "ME/CFS lite", by which I mean they were able to function as normal, but experienced much more fatigue (eg: tending to always fall asleep on the sofa in the evening after a day's work). Lots of people who caught my virus also developed ME/CFS-like sound sensitivity, ME/CFS-like forgetfulness, and interesting, significant word retrieval problems (where during conversation, you can't think of the familiar name or word you are after).

So it was clear to me that although I was the only one to get full blown ME/CFS from the virus, this virus demonstrated a propensity to trigger "ME/CFS lite" symptoms in everyone who caught it. This is why I am pretty sure that this virus was the cause of my ME/CFS. (More details about this virus on my website here).

I just mention this because had I not been observant about this virus at the time that I first caught it, I might have thought that there was no specific trigger for my ME/CFS, and that my ME/CFS was unrelated to any event. But in fact the evidence given above strongly points to a slow viral onset.

Though there do appear to be several non-infectious causes and associations of ME/CFS, including: mold toxin exposure, 1 2 ciguatoxin exposure, 1 2 physical trauma, 1 major surgery (though I always wonder whether this might be caused by a virus picked up from a blood transfusion during surgery), silicone implant leakage, radiotherapy or chemotherapy. 1

 

[Sushi]

...There are many patients who have a slow onset CFS unrelated to any event....

I agree with @Hip here. We may not recognize an event, but it may be there. My onset was slow...until I reached a "tipping point" that threw me into a very long term crash. But when I look back closely I can recognize "events" that were probably precipitous--a flu that lasted 3 months, numerous tick bites.

However the "crash" that dumped me into disability, came decades later.

Sushi

 

[Aerose91]

It is now being found that Borrelia - Lyme Disease is found in most Alzheimer's brains.
I certainly would be following up on the possibilty of Lyme infection.
Kind regards a& hope this helps

That's pretty interesting, thanks for the info. I'm curious about it because borrelia seems to be the only thing that fits my brain symptoms, yet I have severe PEM that I understand usually isn't there with Lyme or co-infections. Energy expenditure really is the reason my brain is so bad.

 

[Gingergrrl]

I agree with @Hip here. We may not recognize an event, but it may be there. My onset was slow...until I reached a "tipping point" that threw me into a very long term crash. But when I look back closely I can recognize "events" that were probably precipitous--a flu that lasted 3 months, numerous tick bites.However the "crash" that dumped me into disability, came decades later.
Sushi

@Sushi This is similar to my story although different triggers over the course of time. I first had a bad throat infection in 2010 (the Dr twice said it was strep but then recanted twice and said it was not strep) for which I took Levaquin which was a neurotoxic trigger. I finally recovered functioning until I had a minor surgery in 2012 and five days after surgery was diagnosed with a severe case of mono/EBV. I can't even imagine what occurred in the surgery that led to mono unless it was a sheer coincidence of timing which seems unlikely.

I managed to somewhat recover from mono until six months later in Jan 2013 I got an upper respiratory virus and two weeks later the tachycardia and heart problems began. This has continued to worsen over time and now I am basically incapacitated with fatigue, PEM, etc. It is frustrating b/c there were so many triggers over the course of the last four years but doctors do not seem interested in them except for my ND.

 

[GcMAF Australia]

Hi Dr. There is no money in it for the drug companies .... That is why ....

The same reason here in Australia, Bioscreen at the Melbourne University is seen as 'alternative' or quackery, yet Dr Butt is arguably the world leader in gut microbiome research ....

The same reason why Doctors here send us (me in particular) to psychologists .... That is when I am not being sued for defamation

You may find it useful to look at hydrogen sulphide poisoning and catalase deficiency ... You may be surprised at what you find .... Both hydrogen Sulphide and Hydrogen Peroxide overdoses cause the mitochondria to dysfunction .... There are even MSDS's available which shows symptoms according to level of exposure ....

Hydrogen sulphide produced by pathogenic strains of normal flora that enters directly into the blood stream ....

The undetectable infection .....

That's pretty interesting, thanks for the info. I'm curious about it because borrelia seems to be the only thing that fits my brain symptoms, yet I have severe PEM that I understand usually isn't there with Lyme or co-infections. Energy expenditure really is the reason my brain is so bad.

There are no rules in regard to Lyme symptoms. It really is one giant stuff up by the authorities, just about everything the govts say is suspect.
To me PEM would be an indication that you have Lyme! but I dont have the proof of this, except a lot of Lyme people have heart problems

 

[mellster]

It is a metabolic condition, caused by chronic sub-acute (likely bacterial) infection(s). The two options for those who have a genetic predisposition or simply the bad luck of a perfect immune onslaught (by triggers such as Mono/Lyme or other immune weakening infections or trauma/surgery/travel) are to amp the immune system to hopefully deal with them itself or to identify the infection and treat it with utmost specificity - the latter is close to impossible without tissue or mucus membrane biopsies.

 

[SOC]

It is a metabolic condition, caused by chronic sub-acute (likely bacterial) infection(s).

Why bacterial? What I've seen suggests that intracellular infections of all kinds are common in ME/CFS.