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Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation

RogerBlack

Senior Member
Messages
902
http://tandfonline.com/doi/abs/10.1080/10833196.2017.1327131
Abstract
Objective: To describe how the effects of gravity may adversely affect the neuro-cardiovascular physiology of individuals with severe Chronic Fatigue Syndrome (CFS).

Design: A narrative review of the literature relating to microgravity, orthostatic intolerance and severe CFS. Emphasis is placed on the clinical significance and implications for the management of patients with severe CFS, with suggestions for future rehabilitation and physical interventions.

Results: Physiological functions in humans have evolved to counter the effects of gravity, in particular the neuro-cardiovascular system. Reducing exposure to gravity will result in deconditioning of these systems. Many of the symptoms experienced by astronauts returning to Earth are shared by those with severe CFS. Prolonged periods in the supine position create an environment similar to microgravity – the mechanism through which we propose orthostatic intolerance develops in CFS. However, there are also some physiological changes present in CFS which may exacerbate these changes. Studies have shown that some CFS individuals have hypovolaemia unrelated to deconditioning. This pre-existing hypovolaemia may make the neuro-cardiovascular system more vulnerable to the effects of bed rest in those individuals with CFS.

Conclusion: Severely affected CFS individuals may be more susceptible to a specific type of deconditioning, related to reduced exposure to gravity, due to pre-existing vulnerabilities in their cardiovascular and autonomic nervous systems. Rehabilitation which targets the neuro-cardiovascular system and its response to upright posture may improve function and symptoms of severely affected CFS individuals.

Lots more study needs to be done on this.
Anyone up for funding me to go to the ISS to try and see what a difference it makes?

Getting flat certainly helps with cognitive symptoms in me.

Someone needs to properly study the spectrum of severity between housebound and 'can get to the toilet on their own from bed'.

Tricky, when what you really want to do is something like visit people, and do cerebral ultrasounds (AIUI there is no simple way of measuring cerebral bloodflow) and brain oxygenation tests.
 
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ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
I'm not with it enough to understand what is being said but i don't think putting ME/CFS patients into outer space will make the condition go away. In fact i will bet money on it. :woot:
 

Kati

Patient in training
Messages
5,497
Which came first, the chicken or the egg?

i remember vividly when I started having orthostatic intolerance. It was not due to me laying down. It is as if something had snapped inside of me.
 
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rosie26

Senior Member
Messages
2,446
Location
NZ
Huh. That would be interesting to research. I feel I exhibited symptoms of POTS before any noticeable symptoms for ME/CFS. And by that I mean that it wouldn't appear that lying down a lot contributed to my POTS. Curious!

i remember vividly when I started having orthostatic intolerance. It was not due to me laying down.
Same with me.
 
Messages
2,158
I've only read the abstract, so I'm not sure whether I'm getting this right.

I saw a program ages ago about a healthy young man who had volunteered to lie flat in bed for 8 weeks (I think) at NASA research centre so they could tests the effects on him physiologically to mimic the effects of lack of gravity. At the end of the 8 weeks they showed him trying to stand up, and I think did a tilt table test on him and he had pretty severe orthostatic intolerance. After a few days of gradually getting used to sitting then standing he was fine, and returned to full health and physical fitness within a few weeks.

The reason I spell this out is that it struck me at the time that one of the factors contributing to the difficulty of people after prolonged bed rest sitting and standing up again might be this same problem - not related to muscle weakness or deconditioning.

I think what this paper is pointing out is that lots of people with ME have low blood volume and OI/POTS as part of their ME, and that therefore the effect of prolonged bed rest will be even greater in ME than in healthy people, a sort of double dose of OI.

I think they are probably saying that treating the effects of lack of gravity may help severe bedbound ME patients, not in any way curing their ME, but reducing the additional problems caused by the heart getting used to not having to push blood so hard against gravity.

From what I've read, I think 2 things may help with this - salt and fluids to increase blood volume, and raising the head of the bed a little, so that even when lying down, the heart still has to push against gravity a bit.

Sending us into space would make the situation worse, in the same way that bed rest does.

Has anyone had access to the full paper?
 

TrixieStix

Senior Member
Messages
539
I'm not with it enough to understand what is being said but i don't think putting ME/CFS patients into outer space will make the condition go away. In fact i will bet money on it. :woot:
I believe the paper is saying the opposite though right?. That the lack of being exposed to normal amounts of gravitational forces on the body thru normal day to day movement, and activities is having a negative impact.

Inactivity and prolonged bed rest are unnatural states of the human body. They are bound to be consequences.

For example: The following cardiovascular changes happen within 24Hours of bed rest....

Increase in Resting Heart Rate (4-15 beats within the first 3-4 weeks then plateaus off)
Decrease in Blood Volume (5% in 24 hours, 10% in 6 days, 20% in 14 days)
 

RogerBlack

Senior Member
Messages
902
I'm not with it enough to understand what is being said but i don't think putting ME/CFS patients into outer space will make the condition go away. In fact i will bet money on it. :woot:

'Make the condition go away' - perhaps not.
In principle make people with severe POTS-related symptoms better, to at least a degree - yes.

If you're not suffering from POTS when active, you can do much more.

It's clearly not a factor very early in the disease.
But, treating POTS could at least help somewhat. At least part of the effort of day-day life is struggling through POTS symptoms.
(perhaps not actual clinical POTS).
By that, I mean that at least a notable subset of people find tasks, from talking to people to complex tasks easier when sitting or lying.
Even if you can't otherwise improve their condition, being able to make it so you can do as much standing up as you can do lying down would be enormously valuable.
 

anniekim

Senior Member
Messages
779
Location
U.K
My OI came on suddenly seven years ago after a short walk when I had been mostly housebound, the walk was too much activity for me. I then became fully bedridden four years ago. I can transfer to a chemical toilet by my bed but no further. I have no doubt I have secondary deconditioning from four years in bed and my orthostatic intolerance which I had before having to be flat is exacerbated even further. However, until there is treatment for the underlying pathology which is what made me bedridden in the first place I cannot address any secondary deconditioning.

I am unimpressed with the suggestion in this paper that deconditoning is the main cause that keeps the severely affected patients bedridden. Even if my OI was marginally improved it is not the only reason my body is too weak to be out of bed. Many dysfunctional body systems contribute to a person with ME being bedridden.
 
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Effi

Senior Member
Messages
1,496
Location
Europe
I had OI before I even knew I had ME, before I even knew what OI/ME was. I didn't know I had anything, just that I was feeling really awful, all the time. From what I have learned about OI over the years, I now know I already had it months before becoming homebound.

I am very unimpressed with this study. It sounds like a fancy wrapper for deconditioning BS.
 

Sean

Senior Member
Messages
7,378
It would be interesting to see how weightlessness affects people who already have ME/CFS.
 

RogerBlack

Senior Member
Messages
902
If arguments are made around the paper that OI is the 'real' problem instigating CFS I wholeheartedly reject them.

There seems to be the risk of such arguments being made.

The rather narrower claim that (increased) OI as a result of bed rest is a factor in worsening the disability felt by a subset of CFS patients seems reasonable.

(the alternative would be CFS induced OI 'protects' from additional bed-rest OI, which seems odd).

An effective treatment for OI alone would help modestly many people.
 

Neunistiva

Senior Member
Messages
442
Maybe I'm reading this wrong, but is it implying that orthostatic intolerance is caused from prolonged periods of horizontalness?


That's how I read it too.

And at least in my case, it's not true. I've been bedridden (with getting up exactly once a day to go to the toilet) for 3 years now. My OI was slowly getting worse all this time (upon standing up I would get tachycardia, PVCs and feel nauseous), and then several weeks ago it cleared up. This coincided with starting to take large doses (3000 IU daily) of vitamin D but it could be a coincidence.

Anyway, after 3 years of being bedridden 99,99% of the time, I don't have OI anymore, while my general health has not improved one bit.