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

Mine is drawn fairly regular too, will try to remember to ask.

 

I had blood drawn recently. I’ve also been finger prick testing to check blood sugar as ME & LC leaving me sicker and sicker, thought worth checking for diabetes as some symptoms similar, doesn’t seem to be the case though. My blood looks a just little darker and thicker than it used to. Blood draw came out fine but finger prick took longer to produce drops.

I am very open to the possibility that there is something different in our blood. I also think it well could be a result rather than a property. Or perhaps for only certain people a property. So like people have mentioned above, I am sick enough to have difficulty moving now, my body temperature is lower than average and I have to drink more water than average to keep myself upright or thinking as well as possible or feeling as well as possible, I don’t always feel well enough to keep up optimal nutrition or remember to supplement when I’m on a limited diet. That’s all difficult to keep on top of. Probably there are lots of us in this position which might affect our blood in various ways.

I would say it feels on a sensory level like my blood is moving slowly and painfully. I think that feeling could arise from many directions but one could be something wrong with the tubes or the blood somehow.

I wonder if it would be a something that happens to everyone with a certain infection or common illness process or something specific to people with ME or something under the ME diagnosis that isn’t ME or is one possible result of ME or only COVID extended acute or something else. Even if ME shares some biological factors with LC I am doubtful that it would be exactly the same with blood abnormalities if these were identified.

It would be a very different situation if the blood differences were something related to general ill health than specific abnormalities.

If a general illness outcome then maybe we have plenty of existing supportive treatments that could be prescribed or advised and already are. Like ‘do some exercise’, but since this isn’t achievable perhaps some gentle passive movement therapy of some kind would be a decent damage limitation substitute. Or to warm extremities wear extra clothing on limbs which is usually not explicitly recommended for younger people. Or specific hydration and nutrition recommendations to optimise blood volume or other simple stuff that might help or a combination of commonly used treatments and recommendations to avoid other commonly prescribed medications in favour of certain others where individual patient requirements allow. We don’t get much of this sort of advice now. Because healthy bodies generally give signals of what they need and with the help of the mind economic system allowing can acquire basic resources to achieve equilibrium. We know sick people need extra help and supportive care as their bodies and minds not operating at optimal levels. But people with ME are not generally viewed as being sick in such a sense. So we have to ourselves throw something at the wall and see what sticks. When we do find something we think works or might work we are open to criticism for believing we are sick enough to need anything and or for trusting something un-evidenced. Since little evidence is available to us, we are in a bind. Very discouraging.

So I guess we will always be vulnerable to those hyping treatment. Slim hope but some hope. That’s better in comparison to the dominant message that our only hope lies in realising we aren’t actually sick at all and therefore don’t need any treatment. Almost all of us have tried out this particular ‘recovery’ method for our ‘very real condition’ and so we know already know, there lies exactly no hope.

We know that the third option of scientific discovery with large scale validation of results, hasn’t yet arrived. Has been actively impeded for decades. That when or if it finally does arrive, there’s likely a good time gap between when it arrives and when action on treatment delivery begins. When treatment arrives will we even be granted access? Will we live long enough to fight for access? So that’s not an option we can rely on a personal level.

Why wouldn’t we spin the wheel, bet on something rather than nothing?
We might get worse, but we might not. We might even get a little better….

Then again we might waste our time our life our money on a massive con.

I split the difference. I mostly prefer to gamble at the lower stakes end. But you never know when you’re gonna end up in over your head.

I resent the paucity of our options. I resent the disproportionate burden of risk on our shoulders.

I know from personal experience how much the medical profession loves to learn from blood over patients. So I think it’s time these organisations policymakers and up to researchers took a proper punt on a closer study of ours individually and collectively. Why not? Money where mouth is. Nothing to see here? Dare them to back themselves and demonstrate that with a deep dive rather than a hesitant toe in the water. If there is indeed nothing they get to earn the smug satisfaction of self validation. Like a good workout, endorphins. We get to tick something off the list escape a dead end and move on.

 

Or people who see what they want to see will always see what they want to see and people who set up unproven treatments costing thousands of dollars tend to be those people. In fact it is the norm. Which is why we get fussy about doing things properly.

Blood from a slow vein often looks 'black' and seems thick. And we have no reason to think it has anything whatever to do with the micro clots that forms in tubes after being centrifuged which nobody has documented in live people as far as I know.

 

And note that the piece we are quoting is written by someone who has consistently given hyped and garbled accounts of alternative therapies. Goodness knows what actually happened at the clinic in Germany.

 

Even if some PWME do have "thick black" blood, the question becomes whether that differs from the percentage of people without ME that have the same type of blood.

FWIW, I've never notice my blood looking abnormal. Do we need a poll of "how often does your blood look black?"

 

No, we need a formal study to see if the peripheral SvO2 (SpvO2) levels are significantly low in LC and non-Covid ME. Then, if this is the case, is it at all disease duration time points? Ie is it unique to LC or does it occur in both but only early disease onset, or throughout ME?

Just to emphasise: venous oxygen saturations should be around 70-80% or better in HCs.

Looking at cardiac surgery patients, peripheral (antecubital fossa and dorsum of hand) values can be roughly associated with central measures and are higher than those central venous measurements [1]. Critical patients with sepsis or shock and high mortality still generally have ScvO2 above 60% [2,3].

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[1] Peripheral measurements of venous oxygen saturation and lactate as a less invasive alternative for hemodynamic monitoring (2018, Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine)

[2] Prevalence of low central venous oxygen saturation in the first hours of intensive care unit admission and associated mortality in septic shock patients: a prospective multicentre study (2014, Critical Care)

[3] The incidence of low venous oxygen saturation on admission to the intensive care unit: a multi-center observational study in The Netherlands (2008, Critical Care)

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SvO2 or SmvO2 is mixed, from the level of the pulmonary artery
ScvO2 is central, from the SVC
SpvO2 is peripheral, from superficial vein in antecubital fossa or dorsum of hand

 

I (pwME) underwent four H.E.L.P. Apheresis treatments at the Apheresis Center in Cyprus.

My blood appeared normal, and I experienced some benefits from the treatments. For instance, my resting heart rate decreased from 90-100 to 50-60 for about 18-24 hours after each session. Additionally, I noticed an improvement in my peripheral vision, possibly due to enhanced blood flow to my eyes. Each treatment left me feeling rejuvenated, as though my nervous system entered a deep parasympathetic state. However, I still experienced PEM approximately 48-72 hours post-treatment.

During my sessions, I observed two Long Covid patients with notably thick and dark blood— "zombie blood" seems like an apt descriptor. One patient's blood was so dense that it clogged the tubes, preventing the apheresis machine from starting. When they removed the tube from her arm, her coagulated blood clung to it like a long black string. After being placed on triple anticoagulation, she returned for another session, which proved successful. Remarkably, she transitioned from being wheelchair-bound to walking after just a few treatments. I witnessed this personally. If it was the triple anticoagulants, the apheresis, or a placebo that worked for her - I don’t know. But she sure looked different and ‘alive’ again.

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I believe apheresis provides benefits for some people, but it’s extremely costly, and the clinic I used seemed a bit shady, with the owners walking around the place, talking about ME and LC like they had the ultimate cure for it (Markus Klotz is an interesting figure, to say the least). It put me off being there, and I was afraid if I was getting scammed. I paid about 5000 EUR for four treatments, and although I had some temporary improvements, it didn't last more than some days. So maybe I did get scammed

However, I’m actually so desperate that if I could afford it, I would likely try 10-20 treatments to see if it provides long lasting results. If it’s reducing auto-antibodies and/or improving tissue oxygenation by thinning the blood, I don’t know. But it does something to disrupt the disease process in for some with ME and LC.

Attaching some photos of my H.E.L.P filter before and after treatment. It obviously helps the placebo to see all that “dirt” being cleaned out of me

 

I'm wondering: could some types of artificial lighting make blood look black? I could imagine fluorescent lighting with narrow spectral peaks making some things look "wrong".

 

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It may be that you were fluid deplete, as this would cause reduced CSF volume. LPs take ages in this case and yes they'd try to do it with you sitting up. Long covid seems to cause weird fluid shifts despite adequate hydration, causing intravascular hypovolaemia which may well cause a difficult LP/dry tap due to reduced CSF volume

 

I definitely have noticed something very similar wrt poor peripheral blood flow- cold purple/grey toes and fingers, hands and feet on bad days and most mornings still. Prolonged capillary refill time, ie very sluggish circulation, low measured oxygen saturations using the usual infrared finger monitor.

When I started on triple anticoagulation I also experienced similar improvements to those described here- ie capillaries opening up, blood flow to extremities, my toes turned pink again. I have Raynauds so initially assumed it was poor temperature regulation and cold intolerance but it persisted even on warming it was very different to Raynauds for me, no pain, no swelling and different colour, so for me it's not just due to the end capillary vasoconstriction with cold.

Normal peripheral venous sats are 60-70%+. Usually most people are 76%ish. Only less if critically unwell- ie severely unwell with metabolic disorders, septic shock, severe hypoxia. I've never seen peripheral venous sats as low as mine, although I'd usually be looking at arterial sats in those conditions.

I measured my peripheral venous sats (antecubutal fossa) and on separate occasions mine were 18-20 percent. This was the opposite to the high sats I'd expected consistent with ME that are reported, due to metabolic dysfunction and uncoupling of mitichondrial oxidative phosphorylation. Of note lactate was also higher than usual.

My blood is definitely black, and subjectively thick- I'm now a slow bleed despite being the polar opposite when I was well. I ran my thromboelastogram when i was just on aspirin and although within the normal range it had relatively high platelet function ie procoagulable.

I'm not sure why sats are low- we have v poor peripheral blood flow, but that's not the whole picture. We definitely need to study it, would be simple enough to do peripheral venous sats. Maybe in ME verses LC verses 'control'.

What would be interesting would be to look at both peripheral & central venous sats too, as central o2 sats have already been studied, but that's far more invasive and higher risk.

 

Former RN here, drawing lots of blood from central line (venous blood) towards the end of my career. Blood has different colours, subtle but some is darker than others, some is lighter than other. Similar to urine color. There are variations, and it does not mean that there is anything ominous.

It reminds me of ‘live blood analysis’ scam.

There is a need for rigorous science.

 

I had some blood testing at Harefield hospital today. I watched the very competent health care assistant insert the needle into my arm and the blood quickly spurt into the thin tube attached. Three phials were quickly filled with red looking blood. The bleeding stopped immediately with no plaster. Nine hours on, there is no sign of a bruise. I have factor V Leiden but the blood flow was clear not sticky.I was well hydrated as I had been drinking water during the 2 hour journey to get there.

 

There is no reason why venous oxygen levels should have anything to do with clots or thickness or stickiness either, @Trish as far as I can work out. This is just a muddled assumption like thinking cod liver oil would lubricate your joints.

Venous blood often clots prematurely if a vein produces poor flow and that has nothing to do with a risk of clots in the person. I am pretty sure that the people who generated this micro clot story did the standard clotting tests in the patients and they were normal. It was just this weird test for micro clots that showed something.

 

I had blood work this week, it was dark but that's usual for me. My CO2 was 26 millimoles per liter, and my O2 was 98%.

I take what the Apheresis group is professing with a grain of salt.

 

I'm learning just as you are Jonathan. I do get excited by the research. I have a masters in ecology; i.e. I am always looking for patterns and connections and when I find them it excites me. I don't have a background in statistics so that's, unfortunately, not a strength (lol). I always try and point out, though, that more research is needed to validate the results - just read the blogs.

As to "promoting" think yourself well "scams" - I'm not promoting anything - I don't receive funding from any mind/body practitioners -rather I'm reporting the experiences of people who have done well using a wide variety of means - whether they involve neuroplasticity, drugs, supplements, etc.

Long ago I decided I would not let my my own beliefs about works in ME/CFS guide what I reported; i.e. I would not discard something that might help others just because I didn't believe in it. I didn't want that hanging over me so through thick and thin I report what's helped people.

Given that we have few clinical trials I don't know what we can go on other than patient experiences. I wish it was different - but that's where we are at.

 

The bigger the megaphone, the greater the responsibility. Reporting successes for N=1 experiments sounds very much like promoting treatments that can be harmful for others and harmful for our community as a whole. It sounds a lot like promoting to me.

You need to be aware that here we talk about science and the way forward. It's what I love about this forum. We "promote" good science, and we criticize where needed. Kindly.

 

I’m fine with reporting on any n=1 treatments that were successful as these can inform further research. Not so fond of the reporting on treatments promoted by well-known grifters, however.