The News From the London Invest in ME Conference

[Cort]

So no great revelation about enteroviruses? Like an easy way to test?

Not according to the tweets...I'll find out more about it. He was excited about something.

 

[Who Me?]

The only things I've seen were about enteroviruses are from the gut and travel up the vagas nerve.

 

[Cort]

The only things I've seen were about enteroviruses are from the gut and travel up the vagas nerve.

Me too!
The big news was supposed to be on pathogenesis. If Chia has evidence that enteroviruses are not just in the gut but in the vagus nerve and brain that would be big news. Perhaps he just strongly speculated that...I imagine he's been speculating that for quite some time though. I'm going to try and get in touch with him.

 

[Who Me?]

It's news but not much to hang our hats on.

 

[Cort]

It's news but not much to hang our hats on.

I see some good stuff coming out of the conference. I think the eye stuff is fascinating - it sounds like it's going to open up new findings that will help validate ME/CFS. The cortical hyperexcitability stuff fits right in with other things that appear to be happening. So do the gene findings. The inflammation in the spinal fluid proteome findings fits as well. I'm really encouraged that that's continuing - that suggests they're continuing to have success.

No really big findings but lots of smaller, good stuff.

 

[Who Me?]

I was talking about Chia and enteroviruses . I haven't been able to read the other stuff. Scanned Fluge and Mella.

 

[usedtobeperkytina]

just to be clear, Jarred Younger is at UAB (http://www.uab.edu/home/, http://www.uab.edu/home/) not the University of Alabama (http://www.ua.edu/). Notice the difference in colors and logo. They have different mascots too.

 

[Bertiedog]

Isn't the pupil response mentioned the same as what happens with severe adrenal fatigue which is caused by the electrolytes being out of whack and if you strengthen the adrenals either by natural means or by taking a steroid this will settle down?

Pam

 

[Cecelia]

Dr Claire Hutchinson - Biomarkers for ME: Visual Processing and ME/CFS.

View attachment 408

"The eyes are the window to your....err nervous system" (not William Shakespeare)​

Finally a major finding. Dr. Hutchinson reports finding a variety of visual problems in ME/CFS: problems focusing, hypersensitivity to light, itchy dry eyes, eye pain, loss of depth perception, problems tracking objects. The more frequent the symptoms, the greater the severity. (A stress/visual glare test can pick these problems up. )

These aren't just eye problems - they're brain problems. Similar problems are found in disorders of cortical hyperexcitability such as epilepsy, stroke and MS. (If migraine wasn't mentioned it probably should have been. Cortical hyperexcitability is found in migraine as well. The rates of migraine in FM and ME/CFS may be pretty staggering (55% in FM) and visual hypersensitivity is a key factor in migraine. It may, in fact, be the most common comorbid disorder in FM. We are probably going to be hearing a lot more about the connections between migraine and ME/CFS and FM over the next couple of years. )

Cortical hyperexcitability could be caused by problems with GABA production or other factors. It may reflect an inability of the brains inhibitory processes from kicking in to slow the brain down. Interestingly, vagus nerve stimulation is one of the treatments used to reduce cortical hyperexcitability. Check out "Reborn..." - recent blog on vagus nerve stimulation.

Patients were slower at finding targets than controls and the more distractions present the worst the ME/CFS patients did. This is reminiscent of the brain finding indicating that ME/CFS patients brains have trouble disengaging themselves from background sounds, images etc. to focus on the task at hand.

Interestingly, ME/CFS patients visual processing speed was OK, but they needed an item to appear for longer before they picked it up - presumably because their brain was engaged in assessing other stimuli.

Dr. Hutchinson is leading projects on reading behaviour, vision-related quality of life, and opthamalic correlates of ME/CFS.

Who knew eye research would end up being so interesting? The eyes are indeed the windows to something in ME/CFS.

The eyes are suddenly getting quite a bit of research. Just recently we have evidence of small fiber neuropathy in the cornea of FM patients eyes, autonomic neuropathy in ME/CFS patients eyes and now problems with tracking, visual hypersensitivity, etc. in ME/CFS patients...

I go to a specialist in autonomic nervous system disorders and he checked my eyes right away. Pupil reflexes are slow. One eye is turning in slightly which affects depth perception. Have had dry eyes for years which I treat. Before treating them it was one eye infection after the next. Very sensitive to light also. Other autonomic problems--like pretty severe hypotension, lack of sweating. All seemed to develop some years after first identifiable onset of ME/CFS.

I do think that one of the most useful things researchers ought to be including in their studies is HOW LONG a person has had ME/CFS or FM and what their age is, because if you mix up early and late patients, the results are watered down and confused. Lots of infections early on then few, but the disease still progresses. Instead of higher inflammation the body downshifts into slow and low as the years roll on. That has been my experience.

 

[Cort]

I go to a specialist in autonomic nervous system disorders and he checked my eyes right away. Pupil reflexes are slow. One eye is turning in slightly which affects depth perception. Have had dry eyes for years which I treat. Before treating them it was one eye infection after the next. Very sensitive to light also. Other autonomic problems--like pretty severe hypotension, lack of sweating. All seemed to develop some years after first identifiable onset of ME/CFS.

I do think that one of the most useful things researchers ought to be including in their studies is HOW LONG a person has had ME/CFS or FM and what their age is, because if you mix up early and late patients, the results are watered down and confused. Lots of infections early on then few, but the disease still progresses. Instead of higher inflammation the body downshifts into slow and low as the years roll on. That has been my experience.

Very interesting Cecelia. Makes complete sense to me...Hadn't thought about autonomic symptoms in this context.

 

[Cort]

I was talking about Chia and enteroviruses . I haven't been able to read the other stuff. Scanned Fluge and Mella.

Right nothing exciting from Chia that I could tell.

 

[Cecelia]

Isn't the pupil response mentioned the same as what happens with severe adrenal fatigue which is caused by the electrolytes being out of whack and if you strengthen the adrenals either by natural means or by taking a steroid this will settle down?

Pam

The adrenals aren't "strengthened" by natural means in this case because the problem isn't the adrenals, it is the lack of signalling from the brain--the HPA axis. The need to "strengthen" adrenals or "adrenal exhaustion" has in my view been a fiction promulgated by the holistic sector and naturopaths, when, in the case of ME/CFS, the problem is neurological and with the whole endocrine signalling system.

I have also taken for years all the hormones including the available adrenal ones which help my body function better but they do not help the problems with the eyes or autonomic nervous system.

It helps to remember that the body works in a hierarchical way primarily with the brain and nervous system at the top, then the pituitary and hypothalamus at the top of the endocrine system followed by the adrenal gland, then thyroid, etc. I don't want to sound personally critical at all, but rather critical towards the ideas promulgated by the army of eager holistic providers and purveyors of health food and supplements that what is broken in ME/CFS can easily be fixed by OTC natural remedies--and if a few don't work, take more and more and more. Would you fix polio or MS or Parkinson's this way? Most of us have shelves and refrigerators full of expensive supplements and remedies which offer little or nothing to a disease which has far deeper roots in the brain, nervous and immune systems.

 

[Bertiedog]

@Cecilia In my case, taking Prednisolone 5.5mg daily has stopped the problem with the pupil reflexes, they are now far more normal and I am only really aware of adrenal symptoms first thing in the morning when it takes a bit longer to get going. I have needed occasional low doses of Fludrocortisone in hot weather but manage without the rest of the time.
I am also greatly improved due also to 9 months of the Cowden Protocol and regularly walking 9000-10000 steps daily.

Pam

 

[TigerLilea]

I don't want to sound personally critical at all, but rather critical towards the ideas promulgated by the army of eager holistic providers and purveyors of health food and supplements that what is broken in ME/CFS can easily be fixed by OTC natural remedies--and if a few don't work, take more and more and more. Would you fix polio or MS or Parkinson's this way? Most of us have shelves and refrigerators full of expensive supplements and remedies which offer little or nothing to a disease which has far deeper roots in the brain, nervous and immune systems.

I totally agree with you on this, Cecelia. Vitamins are not going to be a cure for us. There are a few which might help somewhat with symptom relief such as magnesium for sleep, the B vitamins for depression, or a good multi just to top off anything missed in the diet, but taking buckets full of supplements doesn't make any sense to me. And I can't help wonder sometimes what damage is being done to the body when someone over doses on high doses over time.

 

[Cort]

The adrenals aren't "strengthened" by natural means in this case because the problem isn't the adrenals, it is the lack of signalling from the brain--the HPA axis. The need to "strengthen" adrenals or "adrenal exhaustion" has in my view been a fiction promulgated by the holistic sector and naturopaths, when, in the case of ME/CFS, the problem is neurological and with the whole endocrine signalling system.

I have also taken for years all the hormones including the available adrenal ones which help my body function better but they do not help the problems with the eyes or autonomic nervous system.

It helps to remember that the body works in a hierarchical way primarily with the brain and nervous system at the top, then the pituitary and hypothalamus at the top of the endocrine system followed by the adrenal gland, then thyroid, etc. I don't want to sound personally critical at all, but rather critical towards the ideas promulgated by the army of eager holistic providers and purveyors of health food and supplements that what is broken in ME/CFS can easily be fixed by OTC natural remedies--and if a few don't work, take more and more and more. Would you fix polio or MS or Parkinson's this way? Most of us have shelves and refrigerators full of expensive supplements and remedies which offer little or nothing to a disease which has far deeper roots in the brain, nervous and immune systems.

Actually I have heard from several sources including Dr. Holtorf that the adrenal problem begin in the brain and are not due to "adrenal exhaustion". I think that's probably the most accepted view now.

 

[Cecelia]

Actually I have heard from several sources including Dr. Holtorf that the adrenal problem begin in the brain and are not due to "adrenal exhaustion". I think that's probably the most accepted view now.

Do you know what tests would be best to establish this? All I remember is the 24 hour urine collection and measurement of cortisol in that, as well as the ASDI (?) saliva test, which most doctors don't like. As I remember the standard adrenal test is just a blood level test first thing in the am, and another test, a cortical stimulation test, both of which are okay to determine if the adrenal gland itself is not working, but which don't address the problem of inadequate signaling along the HPA axis. What would be the best test to determine this--a problem at the level of the hypothalamus, do you know?

 

[Cort]

Do you know what tests would be best to establish this? All I remember is the 24 hour urine collection and measurement of cortisol in that, as well as the ASDI (?) saliva test, which most doctors don't like. As I remember the standard adrenal test is just a blood level test first thing in the am, and another test, a cortical stimulation test, both of which are okay to determine if the adrenal gland itself is not working, but which don't address the problem of inadequate signaling along the HPA axis. What would be the best test to determine this--a problem at the level of the hypothalamus, do you know?

That's a good question. I'm not sure - I suspect that they aren't test that doctors ordinarily due. Maybe someone has an idea?

 

[Shanti]

That's a good question. I'm not sure - I suspect that they aren't test that doctors ordinarily due. Maybe someone has an idea?

CRH Stim test
http://www.dartmouth-hitchcock.org/endo/crh_stimulation.html

 

[Who Me?]

@Cecelia @Bertiedog Can you tell more about the iris etc and how to test and who to see? Is there anything in writing about this?

Reading your symptoms really sets off some alarms with my symptoms. Dry eyes, sensitivity to light, don't sweat. This is definitely an avenue to pursue.

Thanks

 

[Shanti]

@Cecelia @Bertiedog Can you tell more about the iris etc and how to test and who to see? Is there anything in writing about this?

Reading your symptoms really sets off some alarms with my symptoms. Dry eyes, sensitivity to light, don't sweat. This is definitely an avenue to pursue.

Thanks

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