ME-CFS-Autism

[Marco]

Battery Muncher (love the name) and mellster; I'll add my own anecdotes on exercise.


In school I was one of life's non joiners (another ASD trait?). Didn't like team sports and didn't participate with the result that I wasn't even remotely athletic. I ended up booted out of the rugby team and into cross country which was the last period of the school day. First (and only) time out my only concern was to get back to the gym and showered in time to catch the usual school bus. I ended up beating everyone including those on the cross country team. They asked me to join (which of course I declined - what a drop-out!) and moved on to swimming instead.

In my late teens I eventually got interested in sports and fitness and ended up swimming 1.5km every day plus playing squash and Ju Jitsu. Despite undoubtedly being the fittest I've ever been though I did always find it an effort and after a session I was always red faced and took ages to cool down again (temperature regulation being one of the first casualities with a mitochondrial deficit).

To cut a long story short I collapsed during Ju Jitsu training and haven't been able to tolerate any aerobic activity since. Despite this I have never become deconditioned. In fact as long as I keep well out of the aerobic zone I can happily shift several tons of firewood with few adverse effects.

As I mentioned above I also have little pain while moving but suffer muscle pain and cramps if I sit still or stand still for long. This seems pretty consistent with a switch to Type II muscle fibres as the mito rich Type I fibres are the ones that maintain posture.

 

[Merry]

Thanks for the thread, Crappy, and to others for your information.

In my family, my mother was always ill and surely suffered from ME/CFS, as I have since my teens. I also am sure that my very eccentric father would have qualified for an Asperger's diagnosis. My eldest brother also I think has Asperger's. And my youngest brother certainly exhibits autistic characteristics though not as severe as the other brother and our father. This youngest brother developed about ten years ago an auto-immune disorder of the intestines and was found then to have a gluten intolerance. I don't know what this all means.

 

[taniaaust1]

I just took this, and I scored 1.4 lower than the average score (32 or higher indicates ASD), but despite that, I do have some very slight hints of it.

Thou I have Aspergers I score only 25 on that test.. it says that 80% of those with Aspergers score 32 or higher.. so Im obviously in the 20% of those with Aspergers who dont on that test. (I usually score way high on Aspergers tests).

When scoring yourself on such a test.. you should consider if its the ME which is making you have a particular answer or if you have been that way all your life.

 

[taniaaust1]

Thanks for the thread, Crappy, and to others for your information.

In my family, my mother was always ill and surely suffered from ME/CFS, as I have since my teens. I also am sure that my very eccentric father would have qualified for an Asperger's diagnosis. My eldest brother also I think has Asperger's. And my youngest brother certainly exhibits autistic characteristics though not as severe as the other brother and our father. This youngest brother developed about ten years ago an auto-immune disorder of the intestines and was found then to have a gluten intolerance. I don't know what this all means.

those who do have Aspergers more commonly suffer from things such as gluten issues then the general population.

 

[Battery Muncher]

Battery Muncher (love the name) and mellster; I'll add my own anecdotes on exercise.


In school I was one of life's non joiners (another ASD trait?). Didn't like team sports and didn't participate with the result that I wasn't even remotely athletic. I ended up booted out of the rugby team and into cross country which was the last period of the school day. First (and only) time out my only concern was to get back to the gym and showered in time to catch the usual school bus. I ended up beating everyone including those on the cross country team. They asked me to join (which of course I declined - what a drop-out!) and moved on to swimming instead.

In my late teens I eventually got interested in sports and fitness and ended up swimming 1.5km every day plus playing squash and Ju Jitsu. Despite undoubtedly being the fittest I've ever been though I did always find it an effort and after a session I was always red faced and took ages to cool down again (temperature regulation being one of the first casualities with a mitochondrial deficit).

To cut a long story short I collapsed during Ju Jitsu training and haven't been able to tolerate any aerobic activity since. Despite this I have never become deconditioned. In fact as long as I keep well out of the aerobic zone I can happily shift several tons of firewood with few adverse effects.

As I mentioned above I also have little pain while moving but suffer muscle pain and cramps if I sit still or stand still for long. This seems pretty consistent with a switch to Type II muscle fibres as the mito rich Type I fibres are the ones that maintain posture.

Fascinating. As for the bit in bold, I'm a lot like this too - I find short bursts of intense (relatively) activity ok. It's longer, repetitive activity that really kills me. I can't jog for 10mins without breaking down, and climbing more than two flights of stairs completely annihilates me. But if I leap up a couple of steps, and take breaks every 5 secs or so, I can handle it surprisingly well.

I also get the cramps.

Also, out of interest, did you contract ME whilst you were still doing swimming?

Similar here - I've done well in a lot of sports, have always been sporty but never reached athletic prowess either, I was a decent sprinter (for my very long legs) and during the course of this journey I have never significantly lost muscle mass, i.e. I feel I have had a type II muscle fibre "shift" (with onset of some muscle twitching) during practising martial arts, but aerobic exercise has become quite challenging. Also, presonality-wise, I have definitely shifted towards the autistic spectrum. While I can function in social situation, I don't enjoy them much anymore and avoid them. But this has definitely also to do with the onset of FM symptoms and gut/inflammatory issues, which just makes it hard to go out of your comfort zone. I bet the link from Autism to physical illness/disorder will eventually be proven beyond doubt cheers

Good post, and I agree with the bit in bold. Seems to be too many coincidences - something must be up here.

 

[Marco]

"Also, out of interest, did you contract ME whilst you were still doing swimming?"

No. As a born again student I could no longer afford to run a car and couldn't make it to the pool on a regular basis so just squash and Ju Jitsu at the time.

If you were thinking contaminated water though its possible as my first symptoms were gastro and I'd just returned from my first foreign holiday where I noticed that the beaches were a little short of 'blue flag' quality.

One thing I did notice is that when I collapsed during Ju Jitsu training it was during warm up exercises using the arms at or above shoulder height (it was also hot).

Even now, although I can shift tons of wood, all the action there is at or below waist level. On the other hand changing a recalcitrant light bulb above head height can be sheer torture.

Of course there's no way of telling if the initial collapse left a lasting legacy on the muscles I was using at the time or if I always had a weaker upper body. I don't recall the latter.

 

[Kate_UK]

http://cogentbenger.com/autism/interviews/finegold-interview/

Our studies suggested that Desulfovibrio, one of the Proteobacteria, might be important in autism because it was seen with some frequency; about 50% of patients with autism but not at all in any of the controls. Now, Desulfovibrio, as the name suggests, changes a sulfate compound such as a hydrogen sulfate. It desulfates them and you end up with hydrogen sulfide rather than sulfate as the principal end product of that metabolism. Hydrogen sulfide is a major toxic compound, known for centuries, actually, but not known to be important in relation to bacteria.

Is this the same hydrogen sulphide that Dr Meirleir talks about for CFS?

 

[richvank]

http://cogentbenger.com/autism/interviews/finegold-interview/



Is this the same hydrogen sulphide that Dr Meirleir talks about for CFS?

Hi, Kate.

Yes, it's one and the same. There are actually two categories of bacteria that can occupy the gut and can produce hydrogen sulfide. The sulfate-reducing bacteria, including Desulfovibrio, is one. The other category is the bacteria that can ferment the sulfur-containing amino acids (cysteine, methionine, or taurine).

I have suggested that those who do not tolerate Epsom salt (magnesium sulfate) baths must have significant populations of sulfate-reducing bacteria in the gut.

Note that Rosemary Waring et al. in the UK found several years ago that children with autism are low in sulfate. Sulfate-reducing bacteria may be a contributor to that.

Best regards,

Rich

 

[xrayspex]

Rich
I don't respond well to mag sulphate and the baths. What is rec'd to do about that? Are there tests to prove it to mainstream docs?

 

[richvank]

Rich
I don't respond well to mag sulphate and the baths. What is rec'd to do about that? Are there tests to prove it to mainstream docs?

Hi, xrayspex.

Mainstream may be a problem, because mainstream medicine is only now beginning to recognize that the intestinal microbiome is important to human health. Alternative and integrative physicians, naturopaths and some others have been aware of this for quite a while.

I know of two ways to approach this from a testing point of view. The first is to run a comprehensive stool analysis to find out what bacteria are present. Since you are in the U.S. (as I am!) you would not be able to run the stool test from Dr. de Meirleir's RED labs in Belgium, which I think it the most comprehensive one in terms of identifying bacteria, including the anaerobic bacteria. The Diagnos-Techs Expanded G.I. Panel, which is available in the U.S. with a doctor's order, is one of the best available here. One can also run one of the stool tests that does not require a doctor's order, such as the ones offered by Genova Diagnostics, Metametrix, or Doctor's Data Lab. They are available from www.directlabs.com.

The other test is the research test offered by ProteaPharma in Belgium, which is available to be ordered via internet and is a do-it-yourself color change test on the urine that gives an indication of the concentration of hydrogen sulfide.

Those are the best approaches I know of. This is not a mainstream-accepted concept yet.

Best regards,

Rich

 

[xrayspex]

hey thanks rich, I am feeling deja vu now, know I have probably discussed these things on the forums in the past years, but I forget! and have a renewed interest in the gut right now.

It reminded me when I was researching this a couple years ago came across this test, think its done in mainstream, would it tie into these things and be useful to request? Hydrogen breath testing for fructose malabsorption

 

[richvank]

hey thanks rich, I am feeling deja vu now, know I have probably discussed these things on the forums in the past years, but I forget! and have a renewed interest in the gut right now.

It reminded me when I was researching this a couple years ago came across this test, think its done in mainstream, would it tie into these things and be useful to request? Hydrogen breath testing for fructose malabsorption

Hi, xray.

Yes. That's one that Dr. de Meirleir runs and finds to be important. He also runs a lactose intolerance breath test. Both can cause gut problems for some people who have ME/CFS.

Best regards,

Rich

 

[drex13]

I scored 30 on that test. I could have gone up or down a few points from some of the questions. Two of my four children have been diagnosed with Aspergers and my wife thinks I also have it. I don't know that I do, but I do know I have some of the tendencies and characteristics, except that growing up I was athletic. I would never have even thought about it for myself if not for the fact the my oldest and youngest have it. Because of that, my wife and I had to learn about it, and she pointed out that I have many of the traits.

 

[Kate_UK]

Hi Rich - what would an intolerance of epsom salt baths look like? I have them sometimes but have not noticed any particular problems?

I've read that children with autism have mitochondrial dysfunction - so why aren't they tired like us? I thought that mitochrondrial dysfunction, like on the Biolab test, explained why we take so long to recover after exertion - so why don't autistic children have the same problem? The study was on children, not adults. http://www.sciencedaily.com/releases/2010/11/101130161521.htm

 

[richvank]

Hi Rich - what would an intolerance of epsom salt baths look like? I have them sometimes but have not noticed any particular problems?

I've read that children with autism have mitochondrial dysfunction - so why aren't they tired like us? I thought that mitochrondrial dysfunction, like on the Biolab test, explained why we take so long to recover after exertion - so why don't autistic children have the same problem? The study was on children, not adults. http://www.sciencedaily.com/releases/2010/11/101130161521.htm

Hi, Kate.

If you haven't noticed any problems with Epsom Salt baths, you probably don't have any! The generation of excess hydrogen sulfide blocks oxygen access to the mitochondria, so it makes it difficult for the cells to get enough ATP to drive their reactions. I think a greater degree of fatigue is one symptom. In some animals, H2S is reported to produce torpor.

I think your question as to why autistic children aren't tired is a good one, and one that I have struggled with for several years. Some mothers of autistic children have told me that their children do experience tiredness, but they express it differently from the way adults do. I can't say if that's true or not. Another thing that I've noticed that might contribute is that it seems from the published studies that in autism, the cortisol levels are either normal or high. In ME/CFS, most people eventually go low in cortisol, though they initially are probably high. Since cortisol is involved in mobilizing fuel for the mitochondria, I think this might contribute to a difference in apparent energy availability between these two disorders. I have considered the possibility that children might be able to carry out anaerobic metabolism at a higher rate than adults, but published studies say it's the other way around, so I don't think that could explain it. That's about the best I can do on this question at present. The children with autism do have glutathione depletion and oxidative stress, and I think that accounts for the mito dysfunction in most of the cases, as I believe it also does in ME/CFS.

Best regards,

Rich

 

[xrayspex]

Hey Kate-I wanted to add what I experienced with mag sulphate both in bath and taken orally or injected...I felt the things Rich said plus more pain and more brain dysfunction....bad mood

 

[barbc56]

I have worked with Autistic children as well as testing them. There is no medical diagnosis called "adult set autism". Just because two conditions share similar symptoms does not make them the same.

A thirty second video is not long enough to tell if a child has autism or not. While there are techniques to help the symptoms and disabilities, they will not cure autism. I have seen the videos on YouTube of children who have been "cured" and am not convinced.

Most Autism experts believe that Autism is inherited and genes have been discovered which may prove this.

Just like certain diet measures will help my IBS, a condition many of us have, it will not cure my CFS/ME.

This article has some graphics worth noting.

http://www.nature.com/nature/journal/v474/n7351/full/nature10110.html

http://health.usnews.com/health-news/family-health/articles/2009/04/28/what-the-autism-gene-finding-means-for-parents

I was not aware of the following:

Steve Scherer, one of the researchers in the study says the results will lead to a paradigm shift when it comes to our understanding of the root causes of autism. "Our research findings point to the fact that the genetic variations that we discovered are actually rare in frequency meaning most individuals with autism are probably genetically unique each having their own genetic form of autism. Now that we know there are numerous genes involved in autism, another very very important finding of the study is we are actually able to tie these genes together in the same biological pathways or networks and they seem to be involved in how the brain functions. Knowing these autism genes are linked we can begin to develop rationally derived therapies to target the common pathways involved for the very first time."

http://thechart.blogs.cnn.com/2010/06/09/new-autism-genes-found/

Bold is mind.

 

[taniaaust1]

I scored 30 on that test. I could have gone up or down a few points from some of the questions. Two of my four children have been diagnosed with Aspergers and my wife thinks I also have it. I don't know that I do, but I do know I have some of the tendencies and characteristics, except that growing up I was athletic. I would never have even thought about it for myself if not for the fact the my oldest and youngest have it. Because of that, my wife and I had to learn about it, and she pointed out that I have many of the traits.

drex. Those with Aspergers can be athletic. The thing thou with Aspergers is that most with it if they are into sports will tend to more so get into sports which arent team sports eg running, swimming etc rather then things like basketball.

I was (before I got ME) athletic. I had trouble with team sports due to how other children percieved me eg they wouldnt throw ball to me when I played netball. The trouble with social interactions will make it harder for the aspergers person to be included in team sports. They also may suffer from much discomfort as they realise they cant interact properly with the others (so sport break times during change overs are uncomfortable often leaving the person standing there alone).

As an adult when I tried netball.. I'd run the others down on the court (knocking them flying) due to not being able to focus on all around me and others and with all the awareness on myself and my own game play... one track mind on getting the ball.

Swimming, long distance running or gymnastics.. I had no issues at all due to them being not team sports.

 

[taniaaust1]

One thing I did notice is that when I collapsed during Ju Jitsu training it was during warm up exercises using the arms at or above shoulder height (it was also hot).

Even now, although I can shift tons of wood, all the action there is at or below waist level. On the other hand changing a recalcitrant light bulb above head height can be sheer torture.

Marco If you havent done so already look into POTS. Not just the heat but also raising arms causing a collapse is a POTS thing. Ive collapsed due to POTS on just raising my arms. Check out http://dinet.org/what_to_avoid.htm which lists POTS triggers.

 

[Marco]

Thanks Tania

While I still have little tolerance for working with arms raised it is one of the symptoms which has improved over time while others have worsened.

When I first became Ill I had real issues with cold intolerance, dizziness on standing and a ghastly pallor to the extent that I had to revoke a significant promotion because the new post would have involved giving standing presentations.

As I said this is less of a problem now and I'd always assumed it was part and parcel of ME.

I will though check the link to see if there's anything I should avoid.