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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS is a metabolic condition!

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
For me, I've learned (way too slowly) that I can keep my symptoms away if I do little enough.

It took me forever to realize that some of my constant symptoms were a cause and effect reaction from low levels of activity rather than an inevitable part of my daily existence. Very clearly for me (as with others), whatever the defect is in my health, it is tightly connected to activity.
.

Absolutely true! Completely agree!
 

SOC

Senior Member
Messages
7,849
But then why don't we have more overt infections, such as shingles?
I have had shingles, multiple times. :depressed: But it's a good question why most of us don't have shingles a lot. It's true in my family that we have more trouble with EBV and HHV6 frequently reactivating than we have with shingles.
 

knackers323

Senior Member
Messages
1,625
I'm not up to reading everyone's replies here at the moment, but wanted to chime in that this fits some of my experience.

For me, I've learned (way too slowly) that I can keep my symptoms away if I do little enough. When I try to do things again, the symptoms reappear (and if I try to do too much, obviously, I get hit with the symptom truck that we all know so well). This can be as little as watching TV, or using the internet, or having conversations. If I were to lie in a room alone and bored, I can be almost symptom-free (in that my symptoms would involve limits on activity that I wasn't currently straining, but I no longer feel sick, painful, tired, etc.). It took me forever to realize that some of my constant symptoms were a cause and effect reaction from low levels of activity rather than an inevitable part of my daily existence. Very clearly for me (as with others), whatever the defect is in my health, it is tightly connected to activity.

When I crash, I feel very sick (among other things), so there's no doubt for me that the immune system is involved somehow. But it could be that it's involved by having been deprived of the necessary energy to keep it working at optimal levels (which allows infections to get out of control for a while). That has always been the explanation that felt the most "right" to me. Alternately, it could be that some energy defect is using up resources necessary for the immune system to function, or something like that. Or it could be that my immune system is so stretched in trying to keep invaders under control that the normal immune suppression that comes from exercise of any kind allows them to take over for a while. But my gut says that energy supplies are deeply involved. If I exert too much (either physically or mentally), my energy resources drain more and more until they literally give out. That shouldn't be possible.

The fact that some of the payback is delayed by around 24hrs has always been very interesting to me. It feels like surely that could help provide some direction for where to look as well.

Same here. The less I do the better I feel
 

NK17

Senior Member
Messages
592
Same here, except I almost never can 'afford' to lay in bed 24/7 and lately the pain is keeping me from reaching a true relaxed state during the daytime, so I end up reading tons of studies and papers etc online and then I crash ...

I also have to report that I've never had shingles; I had IMono as a teenager, chickenpox 2 years after mono and I'm currently on valganciclovir for HHV6, EBV and CMV.

Other family members have/had problems with herpes viruses, amongst them glandular fevers manifestations and lymphomas.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Just found this on the forums-

Marty Pall was one of the first ME/CFS researchers, along with Paul Cheney, Sarah Myhill and myself, to believe that ME/CFS is fundamentally a metabolic disorder in its pathophysiology, which I believe is increasingly being shown to be true.

Best regards,
Rich.
 

Elph68

Senior Member
Messages
598
Just found this on the forums-

Hi Dr Patient,

Please correct me if I am wrong .... My understanding is a metabolic disorder is a disorder where some sort of chemical reaction/overload causes a disruption in the body's ability to produce energy from food ......

What I have been saying, is that hydrogen sulphide produced by resident flora of the eyes, mouth, nose, throat, genital tract and bowel causes an overload of hydrogen sulphide resulting in multi system dysfunction including, as you put it .... a metabolic disorder.

When you take all the known symptoms of hydrogen sulphide poisoning (easily obtainable) and compare them to CFS/ME symptoms .... there is no difference ...... The symptoms of the 2 conditions are the same .....

There are other factors that I believe complicate the condition by making it worse such as viruses, catalase deficiency, biofilm formation, protease expression etc. but I believe the fundamental root cause of this condition is pathogenic strains of normal flora producing too much hydrogen sulfide resulting in multi system dysfunction .....

Hydrogen Sulfide is undetectable in the blood and urine ... the only known way to detect hydrogen sulfide poisoning is by testing the urine for thiosulfate. And that is the test i am trying to get right now .....

Cheers.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Diseases of metabolism, as you are aware, are diseases where the chemical and enzymatic reactions are disturbed. I think ME should be classified under Metabolic conditions, not under Neurologic as it is now.

But you are right, there are so many other insults like viruses, etc in ME. My belief is that all these insults damage mitochondria and Krebs cycle, and thus, the resulting massive collapse of our systems.

I am unaware of the H2S theory. Thank you.
 

Gingergrrl

Senior Member
Messages
16,171
@Dr.Patient I just googled H2S b/c I was not familiar with it at all and there is a current study from University of Exeter that talks about "AP39" and how H2S can help mitochondria damage in many diseases including CFS. I wish I knew how to copy links on my phone to this board but I don't! Can you please google it to interpret it to me? It is very interesting!
 

Elph68

Senior Member
Messages
598
Diseases of metabolism, as you are aware, are diseases where the chemical and enzymatic reactions are disturbed. I think ME should be classified under Metabolic conditions, not under Neurologic as it is now.

But you are right, there are so many other insults like viruses, etc in ME. My belief is that all these insults damage mitochondria and Krebs cycle, and thus, the resulting massive collapse of our systems.

I am unaware of the H2S theory. Thank you.

Hi,

Hydrogen sulphide poisoning does damage the mitochondria and krebs cycle, it is the mechanism that bacteria use to defeat the immune system and is what bacteria use for antibiotic resistance. Hydrogen sulphide poisoning causes metabolic acidosis, blood and iron problems, kills the immune system, causes protein in urine, low and high blood pressure, tinnitus, damages glands such as pituitary, thyroid, pancreas, kidney, liver, causes heart disease, basal ganglia and olfactory lesions, nausea, headache, dizziness, attacks the olfactory nerve (smell sensitivity) and the CNS, causes light and sound sensitivity, peripheral neuopathy, extreme tiredness and fatigue, sleep disturbances, brain fog, cognitive dysfunction, loss of memory retention and recall, speech recall, severe muscle cramping and pain, bronchitis, asthma, mucosal inflammation of the eyes, nose and throat and bowel (IBS) .... and all of these are symptoms (this is not all of them) can be a result of higher level acute exposure or chronic exposure at levels less than 1 part per million, which is practically undetectable.

These are all recorded symptoms taken from numerous studies of not just employees who have had a high dose exposure, but whole communities that surround hydrogen sulphide producing factories. Symptoms also vary from person to person .....

So there are 2 basic facts ... hydrogen sulfide has been shown to cause the same symptoms as CFS/ME and strains of normal flora bacteria produce hydrogen sulfide in the presence of simple sugars or when under stress .... too many hydrogen sulfide bacteria strains leads to too much hydrogen sulfide being absorbed through the bodies mucousa (particularly the gut) which leads to hydrogen sulphide poisoning which the medical people call CFS/ME ....

Viruses produce protease which damages the mucousa and allows for further absorbtion of this toxin, Viridans streptococcus species and enterococcus species also produce protease that damages the mucousa. They are also alpha hemolytic and for those that are catalase deficient, then hydrogen peroxide is able to damage the mucousa allowing for more absorption ... Bacterial biofilms make the effect more concentrated .....

Some simple tests I have done using food grade 35% hydrogen peroxide and samples of naturally occurring hydrogen sulfide, has confirmed this in my case .....

Thiosulfate urine test is the only known way to prove this ..... I reckon this test has to be taken over a period of time in order to show the cyclic effect of this disease .....

This is the undetectable infection .....

Cheers.
 
Last edited:

SDSue

Southeast
Messages
1,066
@Dr.Patient I just googled H2S b/c I was not familiar with it at all and there is a current study from University of Exeter that talks about "AP39" and how H2S can help mitochondria damage in many diseases including CFS. I wish I knew how to copy links on my phone to this board but I don't! Can you please google it to interpret it to me? It is very interesting!
This study?

Stinky hydrogen sulfide may help repair damage to mitochondria
It may smell of flatulence and have a reputation for being highly toxic, but when used in the right tiny dosage, hydrogen sulfide is now being being found to offer potential health benefits in a range of issues, from diabetes to stroke, heart attacks and dementia.

A new compound (AP39), designed and made at the University of Exeter, could hold the key to future therapies, by targeting delivery of very small amounts of the substance to the right (or key) places inside cells. http://ontd-science.livejournal.com/373394.html

First we're asking for people's poo so we can do fecal transplants. Next we're going to ask to smell their farts. lol

As @beaverfury said in the fecal transplant thread:

As for home fecal transplants, i have no problem with the ick factor.
Its trying to convince people that me/cfs is not a mental illness then asking them for their stool that is the difficulty. (Or difficile).
 

Elph68

Senior Member
Messages
598
This study?



First we're asking for people's poo so we can do fecal transplants. Next we're going to ask to smell their farts. lol

As @beaverfury said in the fecal transplant thread:

In normal quantities hydrogen sulphide is produced by cells for controlling body systems such as insulin production and blood pressure .... so overdosing causes a dysfunction ....
 

Gingergrrl

Senior Member
Messages
16,171
@SDSue that is the study but not the exact article/version that I read. It sounds like they are working on a compound AP39 from hydrogen sulfide that will help repair mito damage in the future. It seemed legit but years away from implementing anything into practice.
 

Elph68

Senior Member
Messages
598
This study?



First we're asking for people's poo so we can do fecal transplants. Next we're going to ask to smell their farts. lol

As @beaverfury said in the fecal transplant thread:
Fecal transplants do not work, but theoretically they could do ... I am in the FMT program with the Centre of Digestive Diseases in Sydney, home transplants are very dangerous as they could introduce another strain of bad bacteria to the recipients system, making the recipients condition worse ....

The bacteria are super bugs, pre/probiotics, FMT does not work, the bacterial biofilms they form are much stronger so in order to make a difference, they must be killed first, then do the FMT.
 

Gingergrrl

Senior Member
Messages
16,171
The article/study that I was talking about from university of Exeter has nothing to do with fecal transplants?!! It is talking about a compound from H2S that can repair mitochondria.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Over the years its been reported, as in claimed, that fecal transplants have a 70% success rate, when viewed collectively as case studies. What has not happened though is any properly controlled trial. Further there are indeed risks, particularly when its considered that we still do not understand gut bacteria and how there interact (crosstalk) with the immune system.

KDM has taken a different approach in some patients in first he kills the gut bacteria, then supplements with a range of medical probiotics containing a range of different gut bacteria of known strains.
 

Elph68

Senior Member
Messages
598
Over the years its been reported, as in claimed, that fecal transplants have a 70% success rate, when viewed collectively as case studies. What has not happened though is any properly controlled trial. Further there are indeed risks, particularly when its considered that we still do not understand gut bacteria and how there interact (crosstalk) with the immune system.

KDM has taken a different approach in some patients in first he kills the gut bacteria, then supplements with a range of medical probiotics containing a range of different gut bacteria of known strains.
Hi Alex,

That is what I am doing through CDD .... But they have had minimal success with CFS patients. Their actual comment to me was if Viridans strep and/or enterococcus cause problems in the gut ... they would eat their hat .....

CDD target gram negative bacteria in their FMT program, they use gentamycin ... hence the lack of success. These bugs are also resistant to vancomycin, which is their preferred first line of treatment. Symptoms always return within 6 months of treatment ....

FMT theoretically should work, if the right bugs are first killed and the donor doesn't carry similar strains. This approach however does not take into account the throat, mouth, eurogenital and respiratory tract, nor the lymphatic system, where these bacteria continue to cause disease.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A Lack of Correlation between the Incidence of Lyme Disease and Deaths due to Alzheimer's Disease.
O'Day DH1, Catalano A2.
Author information
Abstract

Reports that Lyme disease (LD) causes Alzheimer's disease (AD) have appeared in academic journals and online. If the biological agent Borrelia burgdorferi that causes LD also causes AD, then areas with the highest levels of LD should have significantly higher numbers of deaths due to AD compared to low LD areas. Here we show there is no statistically significant correlation between the incidence of LD and deaths due to AD in the US. Furthermore, the 13 states with the highest deaths due to AD were statistically different (p < 0.0001) from those with high LD incidence.

Did you mean to post this in a different thread?
 

Lillybelle

Senior Member
Messages
110
Location
Australia
Muscular- nothing shows up on muscle biopsies, no particular muscle protein antibodies, no unusual EMG studies.

Neurologic- brain scans usually normal, some people have abnormalities, but nothing that would explain the levels of fatigue, no focal neurologic deficits on exam, normal nerve conduction studies. However, two things are interesting- abnormal functional MRIs, and some CSF ( not CFS) protein abnormalities.

On other causes, soon!
@Dr.Patient
I'm afraid you're incorrect there. Several studies have shown both brainstem dysfunction, and basal ganglia changes in brain scans between cfs/controls. in particular
A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis
  1. Leighton R. Barnden1,2,*,
  2. Benjamin Crouch1,
  3. Richard Kwiatek3,
  4. Richard Burnet4,
  5. Anacleto Mernone1,
  6. Steve Chryssidis5,
  7. Garry Scroop6 and
  8. Peter Del Fante7
Article first published online: 11 MAY 2011
explore brain involvement in chronic fatigue syndrome (CFS), the statistical parametric mapping of brain MR images has been extended to voxel-based regressions against clinical scores. Using SPM5 we performed voxel-based morphometry (VBM) and analysed T1- and T2-weighted spin-echo MR signal levels in 25 CFS subjects and 25 normal controls (NC). Clinical scores included CFS fatigue duration, a score based on the 10 most common CFS symptoms, the Bell score, the hospital anxiety and depression scale (HADS) anxiety and depression, and hemodynamic parameters from 24-h blood pressure monitoring. We also performed group × hemodynamic score interaction regressions to detect locations where MR regressions were opposite for CFS and NC, thereby indicating abnormality in the CFS group. In the midbrain, white matter volume was observed to decrease with increasing fatigue duration. For T1-weighted MR and white matter volume, group × hemodynamic score interactions were detected in the brainstem [strongest in midbrain grey matter (GM)], deep prefrontal white matter (WM), the caudal basal pons and hypothalamus. A strong correlation in CFS between brainstem GM volume and pulse pressure suggested impaired cerebrovascular autoregulation. It can be argued that at least some of these changes could arise from astrocyte dysfunction. These results are consistent with an insult to the midbrain at fatigue onset that affects multiple feedback control loops to suppress cerebral motor and cognitive activity and disrupt local CNS homeostasis, including resetting of some elements of the autonomic nervous system (ANS

DOI: 10.1002/nbm.1692

AND

Brain imaging reveals clues about chronic fatigue syndrome
Date:
May 23, 2014
Source:
Emory Health Sciences
Summary:
A brain imaging study showed differences in the basal ganglia when chronic fatigue syndrome patients (CFS) vs. healthy controls played a card game. The findings suggest that chronic fatigue syndrome is associated with changes in the brain involving brain circuits that regulate motor activity and motivation. This reduction of basal ganglia activity was also linked with the severity of fatigue symptoms.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@Dr.Patient
I'm afraid you're incorrect there. Several studies have shown both brainstem dysfunction, and basal ganglia changes in brain scans between cfs/controls. in particular
A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis
  1. Leighton R. Barnden1,2,*,
  2. Benjamin Crouch1,
  3. Richard Kwiatek3,
  4. Richard Burnet4,
  5. Anacleto Mernone1,
  6. Steve Chryssidis5,
  7. Garry Scroop6 and
  8. Peter Del Fante7
Article first published online: 11 MAY 2011
explore brain involvement in chronic fatigue syndrome (CFS), the statistical parametric mapping of brain MR images has been extended to voxel-based regressions against clinical scores. Using SPM5 we performed voxel-based morphometry (VBM) and analysed T1- and T2-weighted spin-echo MR signal levels in 25 CFS subjects and 25 normal controls (NC). Clinical scores included CFS fatigue duration, a score based on the 10 most common CFS symptoms, the Bell score, the hospital anxiety and depression scale (HADS) anxiety and depression, and hemodynamic parameters from 24-h blood pressure monitoring. We also performed group × hemodynamic score interaction regressions to detect locations where MR regressions were opposite for CFS and NC, thereby indicating abnormality in the CFS group. In the midbrain, white matter volume was observed to decrease with increasing fatigue duration. For T1-weighted MR and white matter volume, group × hemodynamic score interactions were detected in the brainstem [strongest in midbrain grey matter (GM)], deep prefrontal white matter (WM), the caudal basal pons and hypothalamus. A strong correlation in CFS between brainstem GM volume and pulse pressure suggested impaired cerebrovascular autoregulation. It can be argued that at least some of these changes could arise from astrocyte dysfunction. These results are consistent with an insult to the midbrain at fatigue onset that affects multiple feedback control loops to suppress cerebral motor and cognitive activity and disrupt local CNS homeostasis, including resetting of some elements of the autonomic nervous system (ANS

DOI: 10.1002/nbm.1692

AND

Brain imaging reveals clues about chronic fatigue syndrome
Date:
May 23, 2014
Source:
Emory Health Sciences
Summary:
A brain imaging study showed differences in the basal ganglia when chronic fatigue syndrome patients (CFS) vs. healthy controls played a card game. The findings suggest that chronic fatigue syndrome is associated with changes in the brain involving brain circuits that regulate motor activity and motivation. This reduction of basal ganglia activity was also linked with the severity of fatigue symptoms.

There are PR threads on the above two studies here, here and here.