Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review, 2021, Natelson et al

Highlights

• ME/CFS, a clinical entity of unknown etiology characterized by PEM, is easily diagnosed when following available guidelines.
• Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.
• More studies are needed to understand the role of deconditioning in producing some of the characteristics of ME/CFS.

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medically unexplained illness characterized by severe fatigue limiting normal daily activities for at least 6 months accompanied by problems with unrefreshing sleep, exacerbation of symptoms following physical or mental efforts (postexertional malaise [PEM]), and either cognitive reports or physiological evidence of orthostatic intolerance in the form of either orthostatic tachycardia and/or hypocapnia. Although rarely considered to have cardiac dysfunction, ME/CFS patients frequently have reduced stroke volume with a significant inverse relation between cardiac output and PEM severity. Magnetic resonance imaging of ME/CFS patients compared with normal control subjects found significantly reduced stroke, end-systolic, and end-diastolic volumes together with reduced end-diastolic wall mass. Another cardiovascular abnormality is reduced nocturnal blood pressure assessed by 24-hour monitoring. Autonomic dysfunction is also frequently observed with postural orthostatic tachycardia and/or hypocapnia. Two consecutive cardiopulmonary stress tests may provide metabolic data substantiating PEM.

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0735109721055893

 

Many years ago, Natelson did work on cardiac problems in ME that were very suggestive and replicated casually by other doctors. It is good that his research is being looked at again and being brought up to date.

We really need to know one way or another if ME affects heart function.

 

I think we should stop to talk about the role of deconditioning. It's certainly a small issue especially in severe cases but not the main problem.

I am a goog example. After years i got lucky and stabilised my health. Today i work par time, if i pace i can easily walk 7 000 steps a day. So there is no way that i am deconditioned. Still I have a lot of heart issue typical for ME/CFS. So i would focus on this and not deconditioning.

I would more like to know if there is the problem with circulation, tissue hypoxia, endothel difunction, low blood volume, POTS,...
The researchers are talking about these problems for years but it was not proven yet if it's there and to research it further to know what is the cause.
I talked to many ME patients and most of them feels that these heart problems are big part of our sickness.

 

From what I remember there haven't been any studies that showed a reduced total blood volume in ME/CFS, so I find it rather unfortunate that this state-of-the-art review reports this.

See: https://www.s4me.info/threads/blood-volume-and-red-blood-cell-volume-in-me-cfs.17305/#post-176681

 

It comes down to money. Dr David Bell was the GP from the Lyndonville epidemic who was contacted by a retired consultant who had done a lot of work on low blood volume and its symptoms which were very similar to ME. Together they used their own funding to test Dr Bell's patients. They found that blood volume was very low. I remember Dr Bell saying it was lower than the blood volume which was the cause of death for Princess Diana.

They went on to see what would happen if they increased blood volume by infusing saline and the results were remarkable. They found it impossible to do a study as what can you use as a control for normal saline. The improvements were only sustained if the infusions were repeated every week but infections of the IV line made it unfeasible as a general treatment. One woman persevered for a good while as they meant she was able to work as a lawyer during the week.

As usual none of these findings were picked up to be funded in a large trial.

Dr Bell was the only GP in the area and his friend was elderly when they started so it faded away.

So few proper studies have been done on ME that we need to follow whatever breadcrumbs there are.

 

As my daughter required a pic line for blood transfusions, we kept it in for a very long time. Based on Bell's finding, she would do saline drips at home, and I can truthfully tell you that they did not change the quality of her life. Sometimes, for half an hour, she might move around a little more. But none of the other symptoms ever subsided: malaise, flu feeling, toxic feeling, etc. She generally did 500ml, sometimes 1 litre. It was a very tiring ordeal, and she did these several times a week. Nada, nothing. Eventually, not requiring transfusions anymore, she pleaded to have the line taken out. No real difference.

 

On the subject of blood volume in ME this link, and the links within it, might be of interest :

https://www.healthrising.org/treati...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

[I'm not suggesting that any of the suggestions work - I've certainly never tried them... I'm just saying they may be of interest...]

 

It is because there is substantial overlap between the blood volume of ME/CFS patients and sedentary controls. To the point that reduced blood volume alone cannot be considered a causative factor.

 

What about to check the patients like me. I work part time, i pace a lot, i do 7000 steps a day so i cannot be deconditioned. Still many heart problems. So maybe if we check the patients like me, we would see if the blood volume is there because of few fyzical activity or if it's generally a part of ME/CFS for another reason.

 

Someone who does 7000 steps per day can still be deconditioned, because fitness is about intensity, not number of steps.

 

I suppose that consultant was David Streeten? They published a paper in 1998 that claimed reduced blood volume in CFS patients but the study had no controls. In 2000 they published a study with controls but there was no statistically significant difference with CFS patients (the sample size was only 11).

Source: https://www.researchgate.net/public..._Pathogenesis_of_the_Chronic_Fatigue_Syndrome

 

I wish I had been tested while I was still moderate. I did not know I had ME and my crashes were called migraine attacks so I was reconciled to having these most nights, crawling to bed unable to see was common and I was in constant pain.

But during the day I looked after 2 under fives, did housework, cut the grass, did the shopping and much more. I like to be active and everything was done briskly. I know I was fit because we moved to a house in a valley so everything was uphill and I was soon pushing a pram with a baby, a toddler in a seat and shopping on the bottom up a very steep hill without being out of breath.

All the other ME symptoms were there and I paid for being so active but I was very fit. I had never felt well during my adult life so I just assumed everyone felt as bad as me all the and got on with it.

 

That's a shame and shows why it is a pity that these things were done but then dropped without a proper resolution. Though it was not a treatment that could be kept up forever so best it did not work really well.

Just imagine if they found something that would help but it was a painful procedure you had to undergo every few days. With the track record of ME as a disease that takes and takes I can just see it.

I hope something is found that will help your daughter. It has to happen one day!

 

With such debilitating illness I'm hoping something turns up on the GWAS study - that way there'd be more reliable clues regarding where to focus research.

 

Activities helps to maintain some level of 'fitness', whereas exercise increases our level of fitness? They are not interchangeable.

 

When I say deconditioned, I obviously mean compared to some prior basis.

This may seem surprising, but doing a large quantity of activity ('exercise') doesn't necessarily maintain (or increase fitness). It is the intensity of that activity (activities that reach a high heart rate and high breathing rate) that matters in terms of cardiovascular fitness and intensity of strength training that matters in terms of well, strength.

 

Has anybody seen any studies on reduced nocturnal blood pressure in ME/CFS? When I click on that link, it simply takes me to a Science Direct topic discussing cardiovascular malfunctions. And what would be considered nocturnal hypotension given that blood pressure should drop during sleep? The little bit of reading I've been able to do on this topic focuses on "dipping" i.e. blood pressure dips at night and how a lack of dipping in hypertensive patients is associated with worse CV outcomes. But not much on too much dipping.

Just curious as I often wake up in the morning with a sense that blood has not been getting out to my limbs like it ought. Not that they are cold and blue or anything. But given that many of us talk about waking up feeling ghastly and continue to do so for several hours upon waking, the comment on reduced nocturnal blood pressure in this abstract piqued my interest (though readily acknowledge it's probably irrelevant--especially given that there doesn't appears to be much research suggesting nobody thinks it's worth studying).

 

I don't know if this is of any interest ir relevance to you @Michelle as it's about BPM rather than blood pressure.

I find that when I need to increase my dose of levothyroxine my BPM drops well below 50 at times during the night.

The nights it does that I feel extremely unwell.

I have no idea what happens to.my blood pressure when this happens though as my device doesn't measure that.

 

I'm on a fairly high level of levothyroxine atm (100mg/day) and I'm really ambivalent about it. I've never seen any improvement in my symptoms when we've increased it. It feels almost like we're treating a lab result rather function. But yeah, about the time I started feeling that strange "lack of blood flow" sensation, my resting heart rate abruptly dropped from 70-75bpm to 55bpm and I do have some nights when it appears to drop below 50bpm. I've not yet gotten myself a smart watch to monitor when I'm sleeping (though think I'm about ready to).

I have noticed in the past, like when I've been in hospital so they are monitoring throughout the night that my blood pressure drops to 90/60 or so. Which is also what piqued my interest in that comment in the abstract about nocturnal hypotension.

 

I hope this.isn't too far OT - re thyroid

It is tricky and I found that when allowed to make tiny adjustments myself (while in the care of an endo) I would always put myseilf in the same place to get symptom free - TSH at the bottom of range and T4 at the top. I'm lucky that T4 works for me. Some people don't feel the benefit until they try T3.

I'm not entirely sure what's classed as a high dose but my dose needed to go as high as 175mcg daily at one point. I did have other issues though that might have affected thyroid function at the time.

My current dose is 125mcg daily.

My demand for thyroid hormones fluctuates quite a bit and my dose has varied usually between 125-150 mcg daily. I wouldn't be at all surprised if it affected BP.