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

[ScottTriGuy]

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.

Wow, that's an amazing turn around - it would be quite the coincidence if high dose vit D wasn't implicated - fwiw, I take about 5k a day, but I live in Canada (where every one should be taking vit D supps imo).

 

[anniekim]

@trishrhymes, some people were able to access the full paper. The links didn't work for me. Someone helpfully copied and pasted some sections of it which I will put below.

EXTRACTS FROM PAPER:

"Albeit unexplained, several descriptive studies have noted abnormalities that suggest sedentary lifestyle might contribute to the development of the disease."

"Using her own study: "No relationship between MR or volume measurement and length of disease history were found, further supporting the argument that reduced cardiac volume in CFS populations is not a result of prolonged bed rest"

Their hypothesis: "We therefore propose that the presence of plasma volume changes in some individuals may be a contributing factor to developing CFS. Underlying neuro-cardiovascular abnormalities may exist, which during a prolonged period of supine posture, are compounded by bed rest physiology"

""an innocuous event such as infection or physical illness may reasonably increase their rest to recover. This trigger may send an individual to bed, changing their experience of gravity. As bed rest physiology progresses, plasma volumes will further reduce making the orthostatic symptoms on standing more profound. These symptoms are similar to those experienced by astronauts following space flight due to issues of low blood pressure as previously explained. If the process of rest and recovery is not managed and rehabilitated adequately it could become a maintaining factor. Therefore, some severely affected CFS individuals may be more susceptible to the adverse physiological effects of bed rest."

"Following a biopsychosocial model, CFS should be recognised within the International Classification of
Functioning, disability and health (ICF).33 The ICF states that disability is no longer understood as a feature of the individual, but rather as an outcome of an interaction ofthe person with a health condition and environmental factors. Therefore, gravity may be viewed as an important environmental factor which might be accounted for when creating a therapeutic intervention"

 

[Binkie4]

I have severe OI and increasingly am in a wheelchair, or lying in bed where my brain functions a lot better.

I had become concerned about this, just a gut feeling that reducing being upright/making walking movements might contribute to a reduction in function. I've therefore joined a gym with a good pool, with water that is at constant shoulder level and started walking up and down for 30 minutes.

Have been twice so far. The time in the pool is easy and gentle and it's good to feel my body moving. Getting changed afterwards is not easy- I would not be able to do it on a bad day.

Obviously the water is bearing my weight which makes walking easier.

Does anyone have a view on whether this is helping ability to be upright and maintain functionality, or whether the water bearing my weight makes it irrelevant? I hope to continue doing it anyway so long as I can manage changing afterwards.

 

[bombsh3ll]

My onset was very acute and sudden with severe OI from the start, & although I may be deconditioned now, I was not at the time of becoming ill so there must be another underlying pathology.

Also, when healthy astronauts get back to earth and initially cannot stand up, their bodies gradually become re-accustomed to upright activity however this doesn't happen with GET or similar in the ME population, or when we try and push through when our bodies are screaming "lie down"!.

Binkie4, I am also thinking of going back to the swimming pool. I tried this early on in my illness but didn't find the compressive effect of the water as effective as I had hoped, and also really struggled in the hot changing room afterwards. I think being upright in any form that is achievable for you has got to be better than nothing. Aldosterone the fluid retaining hormone is supposed to be released in response to upright posture sensed by position receptors, so we are certainly in a catch 22 situation there! Being upright in a pool may possibly stimulate this response.

 

[Sidney]

My onset was very acute and sudden with severe OI from the start, & although I may be deconditioned now, I was not at the time of becoming ill so there must be another underlying pathology.

Also, when healthy astronauts get back to earth and initially cannot stand up, their bodies gradually become re-accustomed to upright activity however this doesn't happen with GET or similar in the ME population, or when we try and push through when our bodies are screaming "lie down.

This seems to me the crucial point. ME people can't 'un-decondition '.

I am extremely 'active' in the sense that, altho largely housebound, because I live alone I just have to get up and ...walk down steps across garden, unload the washing machine, find a vital paper, talk to builder or UPS man, any of a hundred things, all the time. And I feel ghastly all the time - until I can be horizontal, with my legs horizontal.
Then I always feel better - still unbearable, if in a PEM crash; or, on a good day, exhausted but much better.

How quickly the OI becomes intolerable varies, depending on how bad the CFS is that day, or hour.
But, I am moving much of the time - (walking is much better than standing, which I can only do for about a minute.)

But the thing is, I am not, or not very, de-conditioned; I am ill, and part of the illness is OI.

 

[DoggerFisher]

OI exists without the deconditioning and it comes and goes. i'd like whoever wrote the paper to come and weed my garden as that's a bugger of a job with low blood pressure .....