“Your Blood is Black”: My ME/CFS Experience with HELP Apheresis in Germany

https://www.healthrising.org/blog/2023/09/25/black-blood-apheresis-chronic-fatigue-syndrome/

• Patrich Ussher traveled from France to Bayreuth, Germany where he underwent 7 apheresis sessions.
• He was told at the first session that his “blood was black” and thick – apparently a common finding in ME/CFS and long COVID.
• The first 3 sessions produced crashes of various degrees but it was also clear that Patrick’s blood was becoming more oxygenated: his color improved and his purple fingernails became lighter. He described what it felt like getting more oxygen into his system “The feeling of oxygen getting into different parts of your body is warm, wet, ‘gungy’ and intense. I felt that sensation flow over my body in powerful waves. My head throbbed with the increased blood flow to my brain.”
• The sixth session produced something of a breakthrough as it became clear that his blood was finally flowing freely and normally and had returned to a more normal color and thickness.
• Four months after his 7th and last session Patrick felt he’d improved a solid 20% and thus far had maintained all the gains he’d received. He still has PEM but is cognitively sharper, sleeps better overall, his body feels noticeably lighter and like it’s functioning better.
• While Patrick is not well his response suggests that something in his blood (microclots, antibodies, immune factors (???)) is indeed playing a role in his illness.

 

ME research in a nutshell. Let's go guys, we will totally be taken seriously like this. I can't think of a reason why anybody would be skeptical.

 

The last time my blood was taken it looked black to me, mainly noticed coz it was vicious enough to take minutes to fill a vial and the nurse waved it front of my face asking if it looked normal to me.

My understanding is that 'black' is a perfectly normal colour for blood, unlike green, which is not, for humans.

 

This is more a comment about Cort than the plausibility of apheresis specifically, but I wonder how much money has been cumulatively wasted on alt-treatment as a direct result of his blog over the years. It must be a ton, right? Really wish our community had someone in his role who was less credulous (see: him promoting think-yourself-well scams) and more scientifically literate (see: him hyping up every preliminary finding).

 

I cannot see any reason why micro clots would make blood thick or black. Darkness of blood is usually just a sign of it being venous and the haemoglobin being adequate.

Micro clots might reduce oxygenation of tissues by blocking entry of blood into capillaries but I do not see why that should lead to blood deoxygenation. If anything there might be more blood going through shunts that bypass the capillaries so the venous blood might be better oxygenated.

I am pretty 100% sure this is just a technician or a nurse bullshitting. It emphasises just how unethical these treatments are without adequate trials.

 

[My bold]

I expect having to drag yourself out of the house and move your body much more will do that, even as it's making you feel worse.

 

Thick blood. Is there such a thing as thick CSF? The last time I had a spinal tap it took close to 90 minutes to collect the fluid, and even then they had me strapped to a gurney which they had to turn upward at like a right angle - I guess to get gravity on their side. I was literally upside down perpendicular to the ceiling for the last half hour or so of the LP..

Thick blood? Pshaw!

 

That's what our human-lizard overlords want you to believe

 

Commenting from my own experience. At around 11 months into documented illness I was enrolled into a long Covid study. 10 of us turned up for blood draws, all looking varying degrees of crap. This was at the central city main community lab (private) which had experienced phlebotomists. About six vials were being taken, so a vacutainer system with a short flexible catheter was used to maintain position while the vacutainers themselves were swapped off and on.

I and 2 others clotted the tubing and required repuncture in the other arm. The phlebotomists were astonished and apologetic and said this doesn't usually happen. I (used to) work with blood and veins on a daily basis and have taken many samples over the years. My blood was abnormal: it was black and thick - at the time I cheerfully described it as "zombie blood".

A week or so later I managed to do some tests in our ICU. Immediately from a blood draw via my intensivist colleague, sitting next to the blood gas analyser, my venous oxygen saturation was 16%. Another passing intensivist's response was "how are you still alive?". Looking retrospectively at my hospital discharge records from 10 months earlier (all tests were "normal") the venous O2 was 22% - not flagged abnormal, with no reference range.

Leaving aside all the problems we've discussed with apheresis and microclots, at least from my experience I wouldn't dismiss the observations made in the article. Specifically I disagree that the technician was bullshitting in the same way neither my phlebotomist or I were/are bullshitting. We literally looked at the blood and said "that's definitely not normal". And at least on the oxygenation side have numeric data to back that statement up.

 

Indeed.

 

Unless there is some documented evidence somewhere that blood is black in ME and Long Covid I think this was bullshitting.

As far as I know oxygenation levels in veins behind a cuff during phlebotomy are pretty meaningless. It is likely to be dependent on the room temperature, the pressure on the cuff and all sorts of unknowns.

 

Venous punctures in left and right forearms. No arteries involved. The article (and my description above) is describing the venous blood as being less oxygenated.

More or less would suggest something is out of homeostatic control. Why the arterial O2 sats should be normal and the peripheral venous O2 sats very low is the question though. If it were simply a matter of "microclots are impairing oxygen transfer" that doesn't easily hold. Why wouldn't there be a similar problem on the pulmonary side so that lung capillaries weren't allowing oxygen to be onloaded, and so make for low arterial sats? I wonder whether the observation might indicate a contribution from circulating lymphocytes (metabolically reprogrammed) in the venous blood pool using more O2 - but I don't know if that's possible or whether it could explain this degree.

One problem with this is Systrom's studies of central venous oxygen saturation showed higher levels in ME. So is there something different relating to say forearm muscle O2 use vs solid organs etc in aggregate?

Great points and I guess eg slowed flow could allow more capillary oxygen extraction and so reduce venous O2 levels. But (and I appreciate this is not formalised data) "control" patients without LC are in the identical environment using the same techniques. Subjectively their blood behaves as expected, but things looked sufficiently different in LC that experienced people can't help but notice and comment on it.

Similar story from Wonko above too —

I still think hypercoagulability and O2 saturations need to be investigated further.

 

I also have noted that I fill blood test tubes more slowly since I've been sick. Blood looks thick to me, but I don't have a lot to compare it to. Maybe I'll ask next time I'm in for a test.

 

I will give my own contrasting experience to keep things representative. When I get blood drawn, they don't have problems with it flowing slowly or clotting.

However, a decent number of pwME have similar experiences to yours. It's hard to tell if it's normal variation or if we're on to something.

 

Note this study for comparison values of normal baseline and ischaemic SvO2 measurements in a (small) group of HCs while developing a non-invasive sensor device.

 

My daughter's blood has been noticeably thicker and slower on a couple of occasions ( normally no issues , if anything she's a " spurter")

This coincided with gastro problems which took a lot out of her.
So perhaps linked to severity and/ or something else going on concurrently.

She's not had blood taken for a while so I have no idea if this has resolved or is still an issue

 

Ehh, my blood is taken a couple of times a year because of my TSH, next time is November. Those women there are taking blood all morning every day, so now I'm going to be the weirdo of the day for them and ask if they notice anything different about my blood or not.