Feeling Old? Research Suggests You May Be: Newton on ME/CFS – Part I

July 19, 2012

Posted by Cort Johnson

‘At the moment, we’re in a very optimistic place”

Dr. Julia Newton

One of our most active researchers, Dr Julia Newton of Newcastle University focuses mostly on autonomic nervous system and muscle  issues.  A recent talk she did with “the Naked Scientist” gave us some exciting news about her work.

Dr. Newton came to chronic fatigue syndrome by an unusual pathway but one which will resonate with any person with ME/CFS who’s felt decades older than their chronicle age.  A geriatrician focusing on fainting in elderly patients, Newton’s interest was piqued by a strange set of younger people with similar issues.

Further study suggested that problems regulating blood pressure were highly associated, to her surprise, with the fatigue in both.  She knew, of course, that fatigue was an enormous problem in ME/CFS but she was surprised at how much fatigue the elderly patients with blackouts were experiencing – long after they had experienced dizziness or blackouts.

That long-lasting fatigue suggested that the fainting problems were an indicator of a larger problem; Dr. Newton believed the fatigued and dizzy elderly patients  were not just getting too little blood to the brain – causing dizziness and fainting –  but were also probably not getting  enough blood to the heart, the other organs and the muscles.   Feel like 80 years old? Dr. Newton’s research suggests in some ways you may be.

A Central Theme Revealed

She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don’t experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…She believes that blood pressure/blood flow problems figure prominently in all these patients.

Causes

 

Blood Flow Problems – Her work backs this up. Recent studies have found impaired blood pressure regulation in ME/CFS and a study of patients showed something that could be caused by problems with blood flows; patients exercising  in an MRI scanner showed a) elevated muscle acid buildup during exercise and b) and then slow removal of it afterwards.

Since blood washes away the acid produced during exercise reduced blood flows (ie impaired blood pressure regulation) could allow acids to build up. (Several studies are examining this possibility). Alternately the transporters that remove acids from the muscles be malfunctioning.

Muscle Problems - Dr. Newton also believe some problems are muscle based and has gone so far as to biopsy muscles in ME/CFS patients,  grow the cells in culture, put nanosensors in them (using a technology she developed), and then measure the changes in pH that occurs as she  ‘exercises’ them. The study will explore why ME/CFS patients energy production system shifts from aerobic to anaerobic functioning so quickly.

You can throw away the deconditioning  theories if Dr. Newton’s latest study proves out; if she finds abnormalities in cellular metabolic functioning they cannot be explained away by deconditioning, behavioral problems, etc.

If she’s correct people with ME/CFS could have problems on both sides of the equation; a) their muscles aren’t getting enough blood to wash away the acids that develop during ‘exercise’ and b) they have metabolic problems as well.

Fixing the problem

Here’s where it gets  exciting. In the Naked Scientist interview, Dr. Newton reported she has some ‘very exciting’ pilot data which suggests she can reverse the acid accumulations using  various medications (unfortunately not named). Reporting that ‘at the moment, we’re in a very optimistic place”, she hopes to be able to tease out the specific metabolic defects present (which could include autonomic nervous system factors since the ANS controls many aspects of muscle functioning) and then aim drugs at them. We’re trying to get in touch with Dr. Newton to find out more about her work.

Kudo’s to the Action for ME group for funding such intriguing work. Check out a description of the study.

 

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40 comments

{ 40 comments… read them below or add one }

Merry July 19, 2012 at 8:06 am

Very encouraging report about Dr. Newton's work. Especially exciting to see that this research is going on at Newcastle University. I'd like to know more about Julia Newton. Thanks, Cort.

CJB July 19, 2012 at 8:29 am

I love the idea that she's developed a technique for exercising the cells instead of the patient. Got a little mental picture of cells doing calisthenics in a petri dish. WTG Dr. Julia.

Gamboa July 19, 2012 at 8:36 am

Very interesting and timely for me. I went to Ithaca for the two day cardiopulmonary exercise testing done by Dr. Betsy Keller and found that I go into anaerobic metabolism earlier than I should ( my AT-anaerobic threshold- is low). There is something wrong with my aerobic metabolism but what exactly and how to study it further is a problem. Muscle biopsies are not easy to have done. Hopefully this study by Dr. Newton will cement what many of us with ME/CFS already know: aerobic exercise is a problem for us.

Sushi July 19, 2012 at 10:03 am

Very interesting. This statement, though, I think needs further exploration:

She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don't experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…She believes that blood pressure/blood flow problems figure prominently in all these patients.

I think many patients who are not at the severe end of the spectrum have significant problems with blood pressure regulation, OI, etc. This was, perhaps, the first symptom I noted and it came a long time before "fatigue" symptoms.

Sushi

jeffrez July 19, 2012 at 10:25 am

Sounds very interesting and perhaps promising, but I'll remain guarded until we hear some actual details about these "treatments." Russian and other sports physiology experts have studies muscle exertion, recovery, etc. for decades. If there were something to remove LA and fatigue and induce faster recovery times, I'm sure we would have heard about it by now. But who knows, sometimes things slip through the cracks. If she has something new and this isn't just some bait and reel in type of maneuver that we see so much of in the ME/CFS treatment community, I definitely think we should hear about it sooner rather than later! Let's hope she's really onto something.

Dolphin July 19, 2012 at 10:47 am

Just to point out that as well as Action for ME, ME Research UK, the ME Association and the Irish ME Trust have funded Julia Newton's research.

Cort July 19, 2012 at 12:43 pm


Sushi

Very interesting. This statement, though, I think needs further exploration:

She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don't experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…She believes that blood pressure/blood flow problems figure prominently in all these patients.

I think many patients who are not at the severe end of the spectrum have significant problems with blood pressure regulation, OI, etc. This was, perhaps, the first symptom I noted and it came a long time before "fatigue" symptoms.

Sushi

Interesting Sushi….I imagine that we can come to it in all sorts of ways…I imagine the problem, once they really dig into it…will be found to be significant in those who are not as ill such as myself. My orthostatic intolerance problems are not overtly so bad but when I stress my system – by overexercising – or going up and down alot – they show up pretty quickly; I think blood flow/muscle problems are key problem for me. This area of research really resonates for me…

Cort July 19, 2012 at 12:46 pm


Dolphin

Just to point out that as well as Action for ME, ME Research UK, the ME Association and the Irish ME Trust have funded Julia Newton's research.

Congratulations to them…These guys are doing some great work! Love to see this good research coming out of the UK.

Cort July 19, 2012 at 12:46 pm


Merry

Very encouraging report about Dr. Newton's work. Especially exciting to see that this research is going on at Newcastle University. I'd like to know more about Julia Newton. Thanks, Cort.

If anyone knows how to get hold of her please let me know…I'd love to do an interview with her.

Cort July 19, 2012 at 12:53 pm


jeffrez

Sounds very interesting and perhaps promising, but I'll remain guarded until we hear some actual details about these "treatments." Russian and other sports physiology experts have studies muscle exertion, recovery, etc. for decades. If there were something to remove LA and fatigue and induce faster recovery times, I'm sure we would have heard about it by now. But who knows, sometimes things slip through the cracks. If she has something new and this isn't just some bait and reel in type of maneuver that we see so much of in the ME/CFS treatment community, I definitely think we should hear about it sooner rather than later! Let's hope she's really onto something.

Agreed, sports physiology is a big industry now…..time will tell what she's experimenting with and indeed if it can be used by humans…(Might she be using drugs on the muscle cells that can
t be used right now – but will the point the way to the right drugs?)

lnester7 July 19, 2012 at 3:01 pm

So exercise according to her should one wait for recovery of muscles or we are unable to recover from the latic acid build up w/o this meds? How long before we recover, how to know when you are recovered?

Just questions if you have the chance to interview her please.

Bob July 19, 2012 at 7:51 pm


Merry

Very encouraging report about Dr. Newton's work. Especially exciting to see that this research is going on at Newcastle University. I'd like to know more about Julia Newton. Thanks, Cort.

Cort

If anyone knows how to get hold of her please let me know…I'd love to do an interview with her.

Details:

Professor Julia Newton
Associate Dean for Clinical Developments and Clinical Professor of Ageing and Medicine
http://www.ncl.ac.uk/iah/staff/profile/julia.newton

Bob July 19, 2012 at 7:59 pm


Merry

Very encouraging report about Dr. Newton's work. Especially exciting to see that this research is going on at Newcastle University. I'd like to know more about Julia Newton. Thanks, Cort.

Julia Newton, and her colleagues, have been awarded two grants from the MRC (the Medical Research Council, the main government-funding body in the UK), as part of a round of funding specifically for biomedical research into CFS/ME:

Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment.
PI: Professor Julia Newton, Newcastle University.

Identifying the biological fingerprints of fatigue.
PI: Dr Wan Ng, Newcastle University.

Here are further details:
http://www.meresearch.org.uk/mrcaward.html
http://www.meassociation.org.uk/wp-…04/Information-for-portfolio_FINAL-2-copy.pdf (See the second and third studies listed in this PDF file. One of them is headed by Dr Wan Ng.)

taniaaust1 July 19, 2012 at 8:09 pm

Im with what Sushi said .. in my case I dont think Prof Julia Newtons comment fits properly

She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don't experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…

If I think about this.. I wonder if Prof Newton is confusing peoples lack of doing much at all.. with "fatigue". I often do get some fatigue (right now.. I arent feeling any at all.. yet I do have severe autonomic BP issues and do get fainting and blackouts at times) .. but compared to many mild ME/CFS cases, I dont get much fatigue at all.. it's the other symptoms which kick in and stop me doing stuff.

I think there is many issues with definitions of different things be it fatigue or whatever.. and others may judge (esp those who arent experiencing how one is feeling themselves eg doctors may judge) ..one not able to do much at all as having severe fatigue.

Unless she by fatigue she was refering to cognitive fatigue??? The severe BP issues I get do give me some severe cognitive fatigue when they are affecting me badly due to blood not getting to my brain. (I was left completely unable to understand language at the supermarket checkout a couple of weeks ago… not sure if I'd say that was cognitive fatigue or not thou when suddenly English is sounding like a completely foreign langauge to me).

But from my experience with things, I just dont believe one can judge the severity of a ME/CFS persons autonomic issue to the level of "fatigue" they have. Im sure Im less "fatigued" then some with ME/CFS who dont have as bad autonomic issues as I do. I feel energy thou I cant act out on it much or I get ill.

mellster July 19, 2012 at 9:49 pm

If you can do light exercise and want to exercise your cells a rebounder (trampoline) is great. Also exercising the cells without the patient is basically what CVAC does. You still should should do light muscle exercises though.

lilpink July 20, 2012 at 3:10 am

As others' have noted it's possible to be very debilitated with multiple symptoms with ME yet fatigue could be the least problematic of those. In earlier decades the fatigue was less challenging for me, and even now with very marked fatigue (without fainting or blackouts) it remains the symptom which concerns me the least. The numerous neurological symptoms, including neuropathic pain and really very profound sensory overload, are much more debilitating and limiting in terms of my ability to take part in normal life . JN's work is interesting indeed, but I feel she is looking at fatigue simplistically, or at least only through the lens of her own speciality. If fainting and blackouts are pre-requisites for classifying a pwme as having severe fatigue then she's missing a whole tranche of severe patients who do not express those two symptoms.

Cort July 20, 2012 at 3:49 am


mellster

If you can do light exercise and want to exercise your cells a rebounder (trampoline) is great. Also exercising the cells without the patient is basically what CVAC does. You still should should do light muscle exercises though.

Thanks Marco…..what is CVAC?

Sing July 20, 2012 at 9:11 am

A help in recovering from exercise or the aching, etc. of PEM is floor stretching and rolling or lying on a rounded wooden or hard foam roller. These two things, the stretching and pressure point massage work, help clear out the lactic acid and move the lymph along where it should go. When I am too tired even to walk around much, the floor stretching and massage work helps my body feel, and be, better.

Sing July 20, 2012 at 9:49 am

Cort, when I read your title, "Feeling Old…You May Be", I related in many ways–physical capacities, cognitive functioning–but was hoping that the article would be about research on actual longevity of PWME. There was some little study years back, out of the UK?, which said that PWME lived about 25 years less than average. But it qualified this result by saying that the higher rate of suicide among us altered this statistic. (Yeah, that makes it better–?)

I have felt older than my age, of course, ever since falling into a disabled condition. I used to work with elders and also do hospice care, and measured my own condition against theirs. I have had good friends one, two, three decades plus older than myself, and seen how they functioned better than I did in key respects–in terms of cognitive abilities, energy, capacity for exercise or exertions, ability to be upright, ability to eat and drink normally, etc–I also had a close friend with AIDS and saw him in different stages of this disease. Here again, he did better than me in many respects. We all know this, but the discrepancy between the condition we find ourselves in and that of others who are legitimately allowed to be limited, sick or disabled–but who may not be nearly as badly off–strikes me with such irony. I have friends now with cancer, going through the stages of it, and yet until nearly the end, they function better than I do. Yes they are dying and facing the ultimate loss, but my life and those of us here have encountered a procession of losses and limitations which have nearly all been unacknowledged and denied, socially and medically.

And then I have to balance these recognitions, and myself, with appreciation for what I do have and go forward with what life is offering me today. This is amazing work. It is, actually, the hard work of old age–facing and dealing with losses until one can emerge on the other side, positively and consciously–not healed but whole, at least in feeling…This is how we are old, like the old, as your title and this little slice of a study do suggest.

anniekim July 20, 2012 at 11:26 am


Sushi

Very interesting. This statement, though, I think needs further exploration:

She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don't experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…She believes that blood pressure/blood flow problems figure prominently in all these patients.

I think many patients who are not at the severe end of the spectrum have significant problems with blood pressure regulation, OI, etc. This was, perhaps, the first symptom I noted and it came a long time before "fatigue" symptoms.

Sushi

Yes, I wondered about this statement too. I have severe M.E (predominantly bedbound) and symptoms of POTS and my body is only happy lying flat (i just can't sustain sitting up for more than a couple of minutes without the overwhelming need to lie flat and if I stay sitting up for too long I crash badly) but I don't have fainting or blackouts….

anniekim July 20, 2012 at 11:41 am


lilpink

As others' have noted it's possible to be very debilitated with multiple symptoms with ME yet fatigue could be the least problematic of those. In earlier decades the fatigue was less challenging for me, and even now with very marked fatigue (without fainting or blackouts) it remains the symptom which concerns me the least. The numerous neurological symptoms, including neuropathic pain and really very profound sensory overload, are much more debilitating and limiting in terms of my ability to take part in normal life . JN's work is interesting indeed, but I feel she is looking at fatigue simplistically, or at least only through the lens of her own speciality. If fainting and blackouts are pre-requisites for classifying a pwme as having severe fatigue then she's missing a whole tranche of severe patients who do not express those two symptoms.

Couldn't agree with you more

Cort July 20, 2012 at 1:08 pm


Sing

I have felt older than my age, of course, ever since falling into a disabled condition. I used to work with elders and also do hospice care, and measured my own condition against theirs. I have had good friends one, two, three decades plus older than myself, and seen how they functioned better than I did in key respects–in terms of cognitive abilities, energy, capacity for exercise or exertions, ability to be upright, ability to eat and drink normally, etc–I also had a close friend with AIDS and saw him in different stages of this disease. Here again, he did better than me in many respects. We all know this, but the discrepancy between the condition we find ourselves in and that of others who are legitimately allowed to be limited, sick or disabled–but who may not be nearly as badly off–strikes me with such irony. I have friends now with cancer, going through the stages of it, and yet until nearly the end, they function better than I do. Yes they are dying and facing the ultimate loss, but my life and those of us here have encountered a procession of losses and limitations which have nearly all been unacknowledged and denied, socially and medically.

I still acutely remember the sensation of being outpaced by a series of elderly woman on my walks as I tried to increase my endurance levels. Not only were they faster than I was but I was astonished to watch them chat away – something I couldn't conceive in my depleted state – as they buzzed up the trails we were walking..

I would find it hard to believe if researchers didn't find quite a few commonalities between CFS patients and the elderly ultimately and in retrospect its probably not surprising that a geriatrician somewhere wouldn't find ME/'CFS an interesting area of study.

Morgaine July 20, 2012 at 1:31 pm


Cort

I still acutely remember the sensation of being outpaced by a series of elderly woman on my walks as I tried to increase my endurance levels. Not only were they faster than I was but I was astonished to watch them chat away – something I couldn't conceive in my depleted state – as they buzzed up the trails we were walking..

I would find it hard to believe if researchers didn't find quite a few commonalities between CFS patients and the elderly ultimately and in retrospect its probably not surprising that a geriatrician somewhere wouldn't find ME/'CFS an interesting area of study.

That was my experience too, I was a fit and active 22 year old when I became ill and vividly remember the shock of suddenly being outperformed by my grandparents who were all in their mid-to late 70s.

In fact, I was only able to start to outperform my grandmother when she began to experience health problems at the age of 93!

Cort July 20, 2012 at 2:02 pm

In fact, I was only able to start to outperform my grandmother when she began to experience health problems at the age of 93![/quote]

:eek: :eek: :eek:

Liz July 20, 2012 at 2:53 pm

Thank you again, Cort! Phoenix Rising and You provide hope where none exists. This research sounds so plausible. It totally resonates with me.

Since blood washes away the acid produced during exercise reduced blood flows (ie impaired blood pressure regulation) could allow acids to build up. (Several studies are examining this possibility). Alternately the transporters that remove acids from the muscles be malfunctioning.

Would this not also explain why some of us feel so bad 24 or even 48 hours after exersion? If the acids in the blood are building up, wouldn't that just make you feel lousy for an extended period of time, making a patient feel somewhat poisoned?

Esther12 July 20, 2012 at 4:04 pm

I feel young!

…but ill.

Premature ageing sound less easily reversible than I was hoping for.

Cort July 20, 2012 at 8:21 pm


Liz

Thank you again, Cort! Phoenix Rising and You provide hope where none exists. This research sounds so plausible. It totally resonates with me.

Would this not also explain why some of us feel so bad 24 or even 48 hours after exersion? If the acids in the blood are building up, wouldn't that just make you feel lousy for an extended period of time, making a patient feel somewhat poisoned?

I think it would…I imagine it could be that the acid buildup in the muscles during exertion takes a long time to go away..I don't really understand why it might be worse the next day – as it sometimes is for me..maybe the acids sitting there continue to bother the muscle cells or contribute to oxidative stress that gets worse as time goes on….

The second article on Julia Newton's work " the Wolf in ME/CFS; Newton on a System Stuck in Overdrive...- is up.

mellster July 20, 2012 at 11:30 pm


Cort

Thanks Marco…..what is CVAC?

Hi Cort, this has been discussed before (but prob disappeared into the archives with the forum move) and a few people lucky to have a fitness/rehab center close by leasing one or more of those pods have access to it, incl. myself. Athletes use it when they cannot exercise anymore due to overtraining but still want to get an edge on their competitors. I don't use/need it anymore, but it was of great help when (over-)exercising would lead to PEM. It works very similar to the rebounder/trampoline effect but the altitude ascends/drops are much more extreme and much faster (you don't work your muscles though since you just sit still). You can read everything about it here:
http://www.cvacsystems.com/
cheers

alex3619 July 21, 2012 at 12:04 am

This is what I recall of lactic acid issues, but its been a long time since I looked at this:

Lactic acidosis is actually beneficial for energy initially. However, the altered pH changes enzyme activity. This means the cell will function less well and have lower energy over time. It is persistent lactic acid buiid-up that is bad, not lactic acid. If whole body lactic acid remains substantially elevated over several days it can induce a condition called lactic acidosis, which can be fatal. Diabetics and those on sustained ketosis diets are at increased risk of lactic acidosis.

So elevated lactate would produce a delayed detrimental response.

Bye, Alex

ukxmrv July 21, 2012 at 12:18 am

Sing,

There must be different sorts of PEM as floor exercises as you described, massage and any extra stimulation make mine much worse. Stretching in particular is like more exercise for me on top and adds to the PEM.

Would be great if we understood more about the different types of PEM and ways to help it. Sounds like we are all different.

Jenny July 21, 2012 at 5:13 am


mellster

Hi Cort, this has been discussed before (but prob disappeared into the archives with the forum move) and a few people lucky to have a fitness/rehab center close by leasing one or more of those pods have access to it, incl. myself. Athletes use it when they cannot exercise anymore due to overtraining but still want to get an edge on their competitors. I don't use/need it anymore, but it was of great help when (over-)exercising would lead to PEM. It works very similar to the rebounder/trampoline effect but the altitude ascends/drops are much more extreme and much faster (you don't work your muscles though since you just sit still). You can read everything about it here:
http://www.cvacsystems.com/
cheers

Is this at all similar to the neuromuscular electrical stimulation that Terry Wahls does?

http://forums.phoenixrising.me/index.php?threads/dr-terry-wahls-ms-recovery-plan.13579/

Even if it isn't its interesting that some form of stimulation, in the absence of physical exercise, may help.

Jenny

Sing July 21, 2012 at 5:36 am

Cort and Morgaine, responding to your posts about being outpaced by elderly people, I have the experience of parking to go into a building, and someone who arrives on the street after me or parks farther away, gets to the door first. This could be a mother with a stroller, or a very elderly person, or someone in a wheelchair. They go right past me, getting to the library or grocery store door first.

mellster July 21, 2012 at 10:38 am


Jenny

Is this at all similar to the neuromuscular electrical stimulation that Terry Wahls does?

http://forums.phoenixrising.me/index.php?threads/dr-terry-wahls-ms-recovery-plan.13579/

Even if it isn't its interesting that some form of stimulation, in the absence of physical exercise, may help.

Jenny

I believe it is more different than similar. The altitudes that pod can simulate go up to 25000 feet. Of course a beginner likely start with ascends to 5-10k feet and less sharp drops. The changes in air pressure and oxygen availability will force the cells in your body to constantly adapt and you have to equalize the pressure in your ears with some maneuvers which come eventually naturally and you don't think about them anymore. It stimulates red blood cell production and more effective oxygen intake as well as certain hormones (testosterone for example). You should commit to at least 40 minutes (one session is 20 minutes) twice a week (after the initial ramp-up) and though you don't exercise yourself it is very tiring. The hypoxia and detox you experience might give you headaches and make you feel very tired, but eventually you will feel increased energy and exercise tolerance, starting already after a couple of sessions. It also increases your pain threshold so that chronic pain is alleviated.

Jenny July 21, 2012 at 12:26 pm


mellster

I believe it is more different than similar. The altitudes that pod can simulate go up to 25000 feet. Of course a beginner likely start with ascends to 5-10k feet and less sharp drops. The changes in air pressure and oxygen availability will force the cells in your body to constantly adapt and you have to equalize the pressure in your ears with some maneuvers which come eventually naturally and you don't think about them anymore. It stimulates red blood cell production and more effective oxygen intake as well as certain hormones (testosterone for example). You should commit to at least 40 minutes (one session is 20 minutes) twice a week (after the initial ramp-up) and though you don't exercise yourself it is very tiring. The hypoxia and detox you experience might give you headaches and make you feel very tired, but eventually you will feel increased energy and exercise tolerance, starting already after a couple of sessions. It also increases your pain threshold so that chronic pain is alleviated.

Thanks mellster. I understand. Could what you describe account for my feeling better at high altitudes though (even without gradual adaptation), for example when skiing when I was only mildly affected.

Bet you'll say this is quite different too!

Jenny

mellster July 21, 2012 at 2:23 pm


Jenny

Thanks mellster. I understand. Could what you describe account for my feeling better at high altitudes though (even without gradual adaptation), for example when skiing when I was only mildly affected.

Bet you'll say this is quite different too!

Jenny

Maybe ;) There are lot of factors at high altitudes / mountains. The air is much cleaner and mostly free of allergens – that my itself can already make a huge difference. Next you get more UVA and more importantly UVB radiation (if you are outside) from the sun which likely increases your vitamin D levels (that is, if you have your face exposed and ideally other parts of the body as well if it is warm enough). Regarding the lower levels of oxygen, humans usually make up for that by producing more hemoglobin which is not always desired, but people used to higher altitudes develop a more efficient use of the oxygen that is available and their hemoglobin is actually lower which can reduce cardiac risk quite a bit (thinner blood). It could also be explained that some patients show some oxygen toxicity, so a lower oxygen concentration and more efficient usage might help lessen oxidative stress and symptoms. Lastly your BP tends to be higher at high altitudes which might be better for folks who suffer form low BP. Maybe you should go and try it for 6-12 months and report back :)

Jenny July 21, 2012 at 3:45 pm

Thanks mellster :D

GracieJ July 21, 2012 at 3:56 pm

Responding to the comments about having less energy than the elderly — I spent a good deal of time helping elderly friends with household chores and grocery shopping ten years ago, thinking maybe I could be a live-in caregiver and cover several areas at once. That idea didn't last very long. My friends in their 80s had more energy than I did. Getting them into my car, then loading their walker or wheelchair, doing the errands, getting them home, settled, then hearing, Oh, could you do one more thing? and asking for a room to be vacuumed or something — wow, I was exhausted. Of course at 40 years younger, they expected me to have all kinds of energy and help them "catch up." I would just go home and go to bed for a day or two! These patterns had not been identified yet as symptoms of anything, but I did wonder just how this could be. So odd. Had to give up on the home care idea really fast.

Calathea August 10, 2012 at 4:20 pm


She sees ME/CFS as a spectrum disorder; on the one end of the spectrum are patients with milder fatigue who don't experience fainting spells and blackouts and on the other patients with high rates of fainting who experience enormous fatigue…She believes that blood pressure/blood flow problems figure prominently in all these patients.

I'm guessing that this is about definitions and subsets. There is probably a very high misdiagnosis rate with ME, going both ways, and also huge overlap with other conditions. One of those conditions is POTS, which Prof Newton also specialises in, and this statement makes a lot of sense for POTS. So there could be various factors here. It could be about the subset of ME patients which she is researching, due to her own criteria: she may believe that the others have a different medical condition, for instance. Or it could be that the people who experience a lot of problems with fainting/blackouts while their ME is mild have POTS as well as, or instead of, ME. Let's face it, none of us is 100% sure what we do and do not have, because diagnosis is still patchy beyond belief, and so many of us end up with a medical condition list as long as our arms. It's entirely possible that what we call ME is actually a group of medical conditions instead. I wouldn't give up on her just because of this, I'd be inclined to find out more. She seems to have a good reputation, and she seems to be talking sense overall.

After a horrible collapse yesterday, which the GP diagnosed vaguely as a "vasovagal attack" (from my description of it; the nurses at the hospital where the collapse occurred seemed to think that a two-hour collapse which included hypothermia and convulsive jerking was not worthy of calling a doctor to check on, and I was in no fit state to insist), I've been talking to STARS, who strongly recommended that I look into POTS. Meanwhile, POTS UK have recommended Prof Newton, who it seems is my nearest decent specialist. A local friend with ME recently told me about a friend's daughter with ME, who finally got to Prof Newton after three years of fighting for appropriate referrals and treatment, was diagnosed with POTS, and has done very well on treatment for it.

There are two problems that I can see. One is how to get to her via the healthcare system, considering that I cannot for the life of me get a doctor to be interested in my problems with low blood pressure, collapsing, icy extremities, shaking fits and so forth, so I've not been referred to specialists for anything at all of that nature. I tell you, the next medical professional to tell me chirpily, "Well, aren't you lucky not to have high blood pressure, you're much less likely to have a stroke!" will be bitten.

Problem 2 would be how to get to her physically, considering that I conked out yesterday after a simple outpatient's appointment just around the corner. (Although in fairness, I was a noodle and overdid it this week, particularly the night before.) I hear that tilt table testing is particularly gruelling, too. It turns out that Newcastle is 90 min away on the train, the stations are relatively close both ends, so I suppose my partner and I could possibly manage to sort out a few days there. It would be exhausting, but if she's really that good, and POTS treatment is actually worth a damn, it may be worth it. I wouldn't be willing to take the risk for someone sketchy, though. Thoughts, anyone?

Sasha August 11, 2012 at 3:17 am

Hi Calathea – sorry you are having this trouble.

Could you do the "poor man's tilt test" if you think you could manage it (find instructions by googling), which you can do at home (supervised in case you drop!), give the results to your doctor with a research paper (search PR for references – I started some threads on this a couple of years or longer ago and there are others – Dr Peter Rowe is a good name to look for), also one or more of Prof Newton's papers on OI and ME, tell him she's a specialist at Newcastle and ask to be referred. Hand him a list of points that show evidence that you have POTS that he can use in his letter, including mention of the vasovagal attack.

Maybe the PMTT isn't necessary – if you have enough symptoms of OI already, and can show him them on an academic paper, maybe that will be enough. I'm a bit worried about your safety doing the PMTT.

Regarding the travel: the only way I can do a long distance journey is lying in the back of a car and breaking the journey overnight at a hotel, if necessary. Can someone drive you? If not, and the train journey is borderline OK, could you choose a quiet time to travel so that you'd have a chance of laying across two seats or sitting with your back to the window so your feet are up on the adjacent seat, knees drawn up? You and your partner could maybe book adjacent seats and he could then sit somewhere else to make sure you get a double seat.

If you're ending up in A&E with this, you need a chance of treatment, I think.

peggy-sue August 11, 2012 at 6:03 am

I'm not acknowledging getting old at all.
ALL my symptoms and bodily failures are the ME.
I'm still as youthful as ever.:D

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