CFS,mitochondrial diease, autism

FernRhizome

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Hi Folks:
I am a member of the United Mitochondrial Disease Foundation and yes, they are very aware of CFS and have many members who have CFS/mito diagnoses like me! In fact there is another thread on mito disease that I just made several postings to which perhaps should be combined with this thread????? I explained the connection between mito and CFS on that thread. And I've called all my mito doctors and faxed them the Science paper on XMRV. They are all going to follow the research for sure.

Any chance we could combine this thread with the other mitochondrial thread? ~FernRhizome (complex II mito patient as well as CFIDS patient)
 

Dr. Yes

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Hey Fern,

How in the world do you get a "mito doctor"? I want one of them docs... and one at the Cleveland Clinic would be nice..!

Btw I edited my last post while you were replying; I put the full PDF link up there (you may have to click the manual load option they give you). It identifies Complex I interference by a viral protein.
 
A

anne

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Thanks, Fern. I'm actually on Carnitor--the insurance is paying for it just fine. Wonder why?
 

Frickly

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It would be great if we could combine these threads. I am very interested in the simularities between autism, CFS and Mitochondrial disorder. I am waiting impatiently to hear about more collaborations regarding these diverse patient groups. FernRhizome, Where can I find your other thread?
 

FernRhizome

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If you contact the UMDF.org group you can ask them for a list of mitochondrial specialists. Most of them are neurologists. And there are a number of mitochondrial forums on the web and if you visit those pages you can find out which mito doctors are nearest you....or you can do what I did and just find one of the best and go to them wherever they are. It can be hard to get in as there aren't enough specialists in the field so there may be a waiting list to see the top docs. ~FernRhizome
 

FernRhizome

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Frickly:
The other mito thread is in the top subject area of the forum listings and called "General" something or other.......I didn't start it but it was started by folks without a mito diagnoses and since I have a mito diagnoses I was able to add some basic info on the mito/cfs connection. ~FernRhizome
 

JPV

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Excerpts from a recent blog post that I made: Wistar Institute, Dr. Elaine DeFreitas, and the Cheney-Bell-DeFreitas Work: Startling Revelations from Wistar's World Patent and Serious Reasons for Concern Now Revealed!

As many of you can remember, Dr. Elaine DeFreitas, Dr. Paul Cheney, Dr. David Bell, and others published the work done at Wistar, in the Proceedings of the National Academy of Science in April 1991. This created quite the excitement and stir as information was released by personal interviews that even made the cover of the CFIDS Chronicle.

It would not be surprising if many of the researchers involved with Wistar scientists were unaware of a world patent that was subsequently issued in April 1992, one year after the PNAS (Proceedings of the National Academy of Science) article! I myself was quite surprised since the contents of this patent have major implications due to the depth and scientific quality of the work.

I certainly believe too that this has worldwide implications and therefore needs to be carefully scrutinized by the scientific community.
More specifically, CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells
Thus, CAV-infected cells could also be characterized by the presence of intracytoplasmic particles.... The apparent location of its virions in the mitochondria distinguishes CAV from HIV."
Under the heading "Morphometric Analysis of CFIDS Retrovirus" the inventor disclose: "Electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, were seen associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria inside the
cells.
Any retrovirus that can invade the mitochondria directly indicates trouble! Why? Because the mitochondria are the energy powerhouses in the body and a direct infection of them spells major trouble --- alteration of mitochondrial function and dysfunctional energy production! This could very well account for the patient's lack of stamina and that 'F-word', fatigue!
As far as I'm concerned here, there needs to be a criminal investigation of the NIH regarding why they refused to fund upon submission of all this data as well as the involvement of the NIH in Grossberg's work. They are supposed to fund based on productivity and Grossberg had none in comparison. Maybe then, some heads will roll and we'll begin to get some real answers! After all, each and every patient certainly deserves this and so much more!
WPI has gone on record saying that the retrovirus that DeFreitas discovered, CAV, is not the same as XMRV.

Excerpt from: Whittemore Peterson Institute: Fact #8

XMRV is Not the retrovirus identified by De Freitas et al.
the publication and patent submitted by De Freitas et all clear describe the molecular characteristics of a retrovirus that is not a gamma (type C) retrovirus.
I'm not so sure myself.

There is a lot more ego involved with Doctor's than most people would probably like to think. On top of that, if patents are involved with these discoveries, there's also a lot of potential money involved too. It could very well be that DeFreitas made some mistakes but was more or less on track. If that is the case, the Researchers at WPI could be exploiting these possible mistakes in order to secure a proprietary patent that invalidates the one taken out by Wistar.

Of course, I'm not an expert on such matters and I'm merely basing my opinion on cynicism, not scientific knowledge. However I find that cynicism serves me well on this degenerate and corrupt planet that I have the misfortune of living on.

Either way, the idea that a retrovirus has invaded our Mitochondria seems to synthesize a lot of current (and old for that matter) ideas that are coming into the forefront as of late. I've been reading some of Dr. MyHill's writings regarding Mitochondia dysfunction in CFS lately and find them very compelling. As far as I'm concerned, a lot of the pieces of the puzzle finally seem to be slowly falling into place. Hopefully some substantive progress will be made soon. In the meantime, I'm going to start experimenting with Dr. MyHill's protocol.
 
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What Kurt said....

We have malfunctioning mitochondria, but that is just one part of the picture of CFS. Given the infection of XMRV is in the DNA, I suspect malfunctioning mitochondria is a result, not a cause. Although, maybe CFS is because someone has both XMRV and a malfunctioning mitochondria, neither of which causes illness on its own.

And by the way, maybe the chemicals is what the Sakudo test was measuring.

You guys remember this story? http://mlb.mlb.com/news/article.jsp...d=2421189&vkey=spt2008news&fext=.jsp&c_id=mlb

Tina
 

richvank

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Hi, all.

For what it's worth, Sarah Myhill and I drafted a review paper on all the published evidence we could find that point to mito dysfunction in CFS, and we found quite a lot. We submitted it to two journals in sequence and were turned down by both of them. We may try again. As has been mentioned, Dr. Myhill and coauthors have published a study correlating measured mito dysfunction with degree of disability in CFS, and they found a good correlation.

As has been mentioned, it looks more like mito dysfunction than genetic mito disease in CFS, but there aren't enough data to say that there are not also some genetic mito diseases in the poeple within the CFS population.

As has also been mentioned, glutathione depletion in the mitochondria has been proposed (by me) as the cause of the dysfunction in CFS. Marty Pall has invoked peroxynitrite as the cause (which is elevated when glutathione is depleted, though Marty does not support glutathione depletion as being the cause of peroxynitrite elevation). Paul Cheney has suggested that lowered activity of the antioxidant enzymes is the cause of the mito dysfunction in CFS, perhaps as a result of viral activity.

For what it's worth, I wrote a letter to the editor of the Townsend Letter, which was published a few years ago, suggesting that CFS and autism are the same disorder, the differences being due to the different ages of onset. Dr. Michael Goldstein and Prof. Malcolm Hooper are two people who had publicly suggested a connection between these two disorders some years before I pointed out glutathione depletion tied to the partial methylation cycle block being found in both of them.

Best regards,

Rich
 

Frickly

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What if XMRV is the cause of mitochondrial disease and CFS in children that were born with the infection? What if adult onset of mito or CFS was caused by a later infection of XMRV or these people had it when they were born but something in the enviornment triggered an activation later on in life? The same could be said for autism as there are some that are born with it and others that experience a regression.
 

JPV

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What if adult onset of mito or CFS was caused by a later infection of XMRV or these people had it when they were born but something in the enviornment triggered an activation later on in life?
That's basically my opinion. That if it is indeed a virus, perhaps it lies dormant until some environmental event or stressor triggers it. My Mother has the same condition and developed it about 5-6 years before I did. It's interesting to note that I keep reading that you inherit your Mitochondria from your Mother. Perhaps it's a virus that is in a large segment of the population, but only becomes becomes active in those with the right combination of genetically weak Mitochondria and exposure to environmental toxins/stressors. Both my Mother and I have worked around toxic chemicals for much of our adult lives.
 

Frickly

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Oh....no.....once again it's all the mothers fault... :) Seriously though, I have read the same thing. I have CFS and my son has ADHD, aspergers, OCD and tourettes. I think my 4 year old daughter may have OCD but hard to know for sure this early. I just know we are close to finding the answers.
 
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That's basically my opinion. That if it is indeed a virus, perhaps it lies dormant until some environmental event or stressor triggers it. My Mother has the same condition and developed it about 5-6 years before I did. It's interesting to note that I keep reading that you inherit your Mitochondria from your Mother. Perhaps it's a virus that is in a large segment of the population, but only becomes becomes active in those with the right combination of genetically weak Mitochondria and exposure to environmental toxins/stressors. Both my Mother and I have worked around toxic chemicals for much of our adult lives.
I've read that most mitochondrial diseases are caused by defective nuclear genes, and can be inherited from either parent or a defective gene from both.
 

spindrift

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It is possible to get free diagnostic for mitochondrial disease (MITO) through MDA (Jerry's kids) since it is one of the diseases they cover.
I called MDA and told them I suspect MITO since almost every adult in my family from my maternal grandma down has fibromyalgia.
I was able to see a MDA doc (who unfortunately specialized in ALS not MITO) for free. After talking to me for an hour and looking at my
other family members health records which I brought with me, he said I have FM because I would have gotten MITO as a child. This is
not completely correct as there is adult onset MITO.

I do encourage anyone with CFS or FM that is interested to contact the MDA for free MITO diagnostic. If some get tested and some come out
positive for MITO, it might get doctors to look more into this direction.

Here is a link to MDA that also shows possible inheritance patterns ( maternal, Mendelson and random mutation):

http://www.mda.org/Publications/mitochondrial_myopathies.html

Also Cheney's take on CFS/ mitochondrial disease way back in 2000:

http://www.prohealth.com/library/showarticle.cfm?libid=7741

As far as my family's inheritance pattern goes it could just as well be vertical XMRV infection. Maybe it is both.
I am SOOOOOOOOOOOOOO looking forward to more research!!!
 

spindrift

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@ FernRhizome,

Thanks for the info on the Mootha test. That is really something to look forward to!

@ richvank,

Thanks for your post. Dr. Myhill rocks. I have been improving on her protocol.
 
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That's basically my opinion. That if it is indeed a virus, perhaps it lies dormant until some environmental event or stressor triggers it. My Mother has the same condition and developed it about 5-6 years before I did. It's interesting to note that I keep reading that you inherit your Mitochondria from your Mother. Perhaps it's a virus that is in a large segment of the population, but only becomes becomes active in those with the right combination of genetically weak Mitochondria and exposure to environmental toxins/stressors. Both my Mother and I have worked around toxic chemicals for much of our adult lives.
My father had Motor Neurone Disease (ALS) and his brother, my uncle, has retinitus pigmentosa (A mito disorder) as did their father. I believe my ME is the result of repeated pesticide poisening when my employer fumigated the work place for fleas. The building had previously stood empty for 12 years and once the workforce moved in, the heating system turned on etc, we were over run by fleas. Previously a family of wild cats had lived in the basement (and we all know what they feed on!). I had the Mitochondrial function profile test done by Dr M which showed I produce little energy which is rapidly depleted on exertion. I am low on CoQ10, Zinc and Copper and have a significant increase in cell degradation (almost on a par with someone undergoing cancer chemo). My Dr has ignored all this info. I have since found out that there are at least 6 of my ex work coleagues that now have ME. I don't know if this is significant but my son has Bipolar disorder and possible Aspergers.
 
G

Gerwyn

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viruses and acquired mitochondrial dysfunction

The myriad of apparently unconnected symptoms of ME/cfs can all be accounted for by one problem -mitochondrial dysfunction or more accurately aquired mitochondrial dysfunctiom Severe-HPA axis,immune,cognitive,endocrine and neurological problems all occur as a result of problems in the body's powercells---you even need energy to maintain sleep! Even extreme symptoms like seisures,paralysis and absence of propioreception can be explained by this central abnormality.There is some very persuasive evidence published in the UK in support of this.There are numerous viruses which are known to cause mitochondrial dysfunction such as epstein Barr and the viruses that cause mumps measles and so on.They do so by integrating into the mitochondrial DNA ,which is essentially a plasmid, and cause errors in the reading frame ,and thus mitochondrial protein, causing dysfunctions.XMRV could well be another virus capable of injuring mitochondria perhaps even the main one!mitochondrial dysfunction can also be caused by other environmental factors such as organophosphates etc----Gulf war syndrome increasingly appears to be Mito poisoning-----Just as an aside many poisons act on the Mitochondria and many people complain of feeling poisoned I know I did----Apologies for the non scientific anecdote
 
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Gerwyn

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mitochondrial disease transient character

This has already been studied extensively and I would say yes, among other things CFS is an ACQUIRED Mitochondrial disease. Look at the work of Dr. Sarah Myhill. But we do not fit into the category of known mitochondrial diseases, because this is not just mitochondrial failure, CFS is more complicated than the simple mitochondrial diseases. And the mitochondrial failure appears to be reversable in CFS, which is not true for the other mitochoncrial diseases. Some people believe that low glutathione (due to infections or toxins), or intracellular infections (like mycoplasmas) are the cause of the mitochondrial failure in cfs.
We do fit into the category of aquired mitochondrial diseases mutations in mitochondrial dna may be transient and not permanent-Black et al chest aug 2001The number of people with me/cfs who recover premorbid function is actually very small.Mitochondrial failure would account for all the symptoms regarded as core in the Canadian criterea,neurological,autonomic cardiovasculat,immune cognitive etc I dont know if mitochondrial failure is complex but its consequences are totally devastating . I dont know of any other hypothesis that fits as the cause of otherwise disparate symptoms
 
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Gerwyn

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letter To Barack Obama

This letter is rather brief but the list of signaturees is very long containing many eminent names.This letter is fascinating because it lists many diseases related to mitochondrial dysfunction which are debilitating but treatable either conservatively and or pharmaceutical intervention therefore THEY NOT INEVITABLY PROGRESSIVE.There are many researchers interested in this area I wonder if they are worth contacting?Are any of them known to the WPI.
January 22, 2009



President Barack Obama
The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500



Dear President Obama:



We represent a broad spectrum of physicians, scientists and researchers and are writing to express our strong support for your commitment to expand scientific research. As you consider this increased investment in science, we want to highlight a very important and potentially far-reaching area of inquiry. Specifically, greater understanding of the mitochondria could provide insights into treatments for a wide range of diseases and conditions that affect millions of Americans.



Mitochondria are often called the “powerhouses of the cell.” They are specialized compartments within almost every cell and are responsible for producing the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce the energy required for all bodily functions. If the mitochondria fail to produce sufficient energy, the cell will not function properly and organ systems will fail.



Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Autoimmune diseases such as multiple sclerosis, lupus and rheumatoid arthritis also may have a mitochondrial basis. There also is new evidence that mitochondrial dysfunction plays a role in the cause of some children’s autism.



There also are “primary” mitochondrial diseases that usually result from genetic defects that reduce the ability of the mitochondria to produce energy. Mitochondrial disease was recognized relatively recently with the first cases diagnosed in adults in the 1960s and in children in the 1980s. Every 30 minutes a child is born who will develop a mitochondrial disease by age ten. Research published six months ago showed that more than 1 in 200 people have mitochondrial DNA mutations that could lead to mitochondrial disease.



Acknowledging the potentially far-reaching implications that would result from a deeper understanding of the mitochondria, The National Institutes of Health recently committed to establish a mitochondria research initiative that would involve all NIH institutes. This initiative will play a significant role in advancing science and medicine. In the 2008 appropriations legislation, the United States Congress expressed its support for intensified mitochondrial research within NIH.



While some steps are being taken, much more could be done to increase our understanding of this critical area of human health. Because mitochondria are so important to the health of cells, a full understanding of their function and dysfunction will have a significant impact on the health of our citizens and will lead to prevention and cures for medical problems that currently affect millions of Americans. We respectfully urge your Administration to include research into mitochondrial medicine among your top medical and research priorities.



Respectfully,



Salvatore DiMauro, MD

Lucy G. Moses Professor of Neurology Columbia University New York, NY

Bruce H. Cohen, MD

Chief of Pediatric Neurology The Cleveland Clinic Cleveland, OH

Robert K. Naviaux, MD, PhD

UCSD Mitochondrial and Metabolic Disease Center University of California – San Diego San Diego, CA

Peter W. Stacpoole, PhD, MD

Director, General Clinical Research Center Director, Clinical and Translational Science Institute Associate Dean, Clinical Research and Training University of Florida Gainesville, FL

Sidney M. Gospe, Jr., MD, PhD

Herman and Faye Sarkowsky Endowed Chair Head, Division of Pediatric Neurology Professor of Neurology and Pediatrics University of Washington Seattle, WA

Douglas C. Wallace, PhD

Director, Center for Molecular & Mitochondrial Medicine and

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Biological Chemistry School of Medicine

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Charles Hoppel, MD

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Jerry Vockley, MD, PhD

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John M. Shoffner, MD

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Vamsi Mootha, MD

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Douglas S. Kerr, MD, PhD

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Michio Hirano, PhD

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Amy C. Goldstein, MD

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Kendall B. Wallace, PhD

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Gerald S. Shadel, PhD

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Sion Williams, PhD

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Lee-Jun Wong, PhD

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Dennis R. Winge, PhD

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Tina Wenz, PhD

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Mindong Ren, PhD

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Massimo Zeviani, MD, PhD

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Brian Robinson, PhD

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Anu Suomalainen, MD, PhD

Sigrid Juselius Professor of Clinical Molecular Medicine Finnish Centre of Excellence for Research on Mitochondrial Disease and Aging (FinMIT) University of Helsinki Helsinki, Finland

Tanja Taivassalo, PhD

Department of Kinesiology & Physical Education McGill University Montreal, Quebec, Canada

Sandra R. Bacman, PhD

Departmemnt. of Neurology and Cell Biology & Anatomy Miller School of Medicine University of Miami

Patrick F. Chinnery, MBBS, PhD, FRCPath, FRCP

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Annette Feigenbaum, MD, ChB, FRCP

Associate Professor, Department of Paediatrics University of Toronto Medical Director, PKU Program The Hospital for Sick Children Toronto, Ontario Canada

Eric A. Shoubridge, PhD, FRSC

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Howard Zucker, MD, JD

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Richard H. Haas, MD

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Lawrence I. Grossman, PhD

Professor of Molecular Medicine and Genetics Henry L. Brasza Director Center for Molecular Medicine and Genetics Wayne State University School of Medicine Detroit, MI

Carlos T. Moraes, PhD

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Eric Schon, PhD

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Devin Oglesbee, PhD

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Grazia Isaya, MD, PhD

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Arun Srivastava, PhD

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Gregory M. Enns, MB, ChB

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William Craigen, MD, PhD

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Juan M. Pascual, MD, PhD

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Antoni Barrientos, PhD

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Marni J. Falk, MD

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Mikhail Alexeyev, PhD

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Francisca Diaz, PhD

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