“Your Blood is Black”
“Your blood is black”, said the nurse. “And thick, very thick. We see this with all our Long Covid and ME patients, their blood is very dark and thick. It is not like this with our other patients who have apheresis.”
I am now 45 minutes into my first session and my body is starting to feel waves of deeply relaxing warmth: my blood is suddenly seeping into microcirculatory spaces that have long been cut off. I also feel mild paresthesias in different parts of my body. The doctor explains to me that both of these things are signs of improving circulation.
I watch my blood as it goes out of my right arm and into the HELP filter. There, my plasma is separated out from my red blood cells (the latter are not affected by the procedure in any way). My plasma is then “washed” by coming into contact with enormous amounts of the blood-thinning agent, heparin. I say “enormous” as this truly is the case: while a typical daily oral dose of heparin might be around 20,000 units, the HELP filter makes use of a whopping 400,000 units of heparin.
Now, I’m no biochemist, but I would imagine that ingesting that much heparin at once would quickly result in an early grave. The reason that this does not happen in the case of HELP apheresis treatment is that essentially all of the heparin is reabsorbed by the filter.
The filtered blood is then returned via my left arm. The whole procedure works in a kind of loop: out, in, out, in. 200 ml of blood is outside the body at any one time and, in total, anywhere between 2 – 4 litres of plasma volume are filtered in any given session.
In a healthy human body, there are usually around 2.8 litres of plasma but, given the hypovolemia that is so central to the illness, this amount will probably be reduced in most patients with ME/CFS. As a result, I felt that 3 litres plasma filtration was enough for me, and I stuck with this amount throughout my treatments. In total, my apheresis sessions usually lasted around 3 hours.
I had come to the dialysis center in Bayreuth, Germany, out of a moment of desperation. I have had ME/CFS for five years. For around half of that time, I have struggled to go for a walk of even 5 minutes. During those periods, I was usually housebound, perhaps capable of one short outing. In early 2021, I was not far off from dying from ME/CFS after the most horrendous symptoms of my life (I later resolved those episodes myself through my own research and have recently published a free book that stems from that experience – you can find more details about it in my bio at the end of this article).
From there, I improved overall and, following Prof. Klimas’ recommendations for reconditioning with ME/CFS, I very slowly built up to being able to walk around 2 km (1.2 miles) on a good day, albeit slowly and with rests. It took me almost two years to get to that point. One day I did my walk when I shouldn’t have, crashed badly, and found myself stapled to the couch for the next week, struggling to sit up and lift an arm. It was then I decided I was going to take a risk and try something different.
I had been intrigued by HELP apheresis ever since I saw it discussed in a BBC interview with Dr. Beate Jaeger, who has pioneered the use of HELP apheresis for LC/ME, and Dr. Asad Khan, an NHS lung doctor with Long Covid who has himself benefitted from apheresis. That interview introduced me to the idea that the blood in ME patients could be riddled with microclots: clots so small that they won’t give you a stroke but so numerous that they have their own significant pathological effect.
The work of Prof. Pretorius and colleagues, as she confirmed to me in correspondence, has indicated that microclots exist in ME/CFS at a significantly higher rate than in a healthy person – and this rate can be even higher in people with Long Covid. In these illnesses, these microclots – also called ‘fibrin amyloids’ – are able to attach themselves to the already-damaged endothelium lining the blood vessels, thereby interfering with the transfer of oxygen from the bloodstream into the muscles and organs.
Note that microclots do not appear to affect the amount of oxygen in the blood (i.e. oxygen saturation) but do appear to affect the body’s capacity to transfer that oxygen to everywhere else. Could all these microclots and the inflammatory molecules that accompany them make the blood so condensed that it can turn darker, perhaps almost black, in appearance, in some patients? As has often been said of ME/CFS, there is indeed something in the blood.
Microclotting can explain, at least in large part, several significant symptoms: exercise intolerance, air hunger, pressure in the chest, breathlessness upon exertion, and feeling like blood is not getting into your skin. It can also contribute to the severity of post-exertional malaise.
Microclotting, though, is about more than just specific symptoms: it appears to create a widespread problem of tissue hypoxia (low oxygen levels) able to potentially affect the functioning of the entire body at some level.
Could microclots, though, be playing a causal role in the development of ME/CFS? That appears unlikely. Instead, it appears that the microclots are probably a consequence of other core illness processes, likely driven by an upregulation of clotting pathways.
That is not to say that heavily microclotted blood does not create a physiological disaster for someone who has it, and that correcting it might not lead to a significant improvement in health, thereby improving a person’s long-term chances of total recovery.
I’d often wondered if I’d had microclots and then came across a questionnaire that purported to determine whether they applied or not. I learned that purple fingernails could be one sign and that another could be the slow return of circulation to the fingernail after pressing hard on it for several seconds. I immediately tried pressing hard on my fingernail: instead of an instantaneous rebound, my fingernails returned to normal after 3 seconds. And to say that they were purple would be an understatement.
The first apheresis session was over. I felt woozy and shaky but otherwise okay. I looked over at the filter and was amazed to see all the microclots and clotting factors (such as fibrinogen) that had been taken out of me. The residue – a kind of white, dirty sludge – sat there near the bottom of the filter. ‘How the hell was I living with all that stuff inside me?’, I thought to myself.
That question came back to me later when, in the following two treatments, the treatment produced even more residue. “This is what often happens”, Lisa, the nurse, told me. “I think it is because, in the first session, the blood is too thick for the filter to work so effectively. After it has been made a bit thinner, the filter can be even more effective.”
I was wiped out after the first session and went into a small crash. A couple of days later, however, I noticed some changes in my body: the pressure in my chest had diminished, my arms did not instantly burn when I pushed open the heavy door of a shop and, I had no doubt, my fingernails looked noticeably lighter. These were all encouraging signs.
After my second session, my body felt much lighter. There were times that I felt like I was gliding through air on my walks (at least in comparison to my previous experience). I had some colour in my face, which had been pale for years, and my body felt sunnier. However, I still had a very bad flare-up at one point which resulted in some of my worst symptoms. Things were improving, but my illness was very much still there, ready to do its thing.
The aftermath of the third session was very challenging. I cannot emphasize enough the importance of resting, for at least two days, after an apheresis treatment. I had mistakenly thought, given my improvements, that I could still potter around the center of Bayreuth where I was staying. My body meanwhile was struggling to adapt to the massively increased oxygenation that occurred after session three. The result was that I crashed badly and was housebound for several days, struggling even to get around the apartment.
I say ‘massively increased oxygenation’ as this really was the case. I have never experienced anything like the after-effects of my third apheresis. 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. I lay still and let it pass.
The following four treatments passed more straightforwardly: each time, I felt an improvement in oxygenation. My body continued to become lighter and warmer. My fingernails also became lighter in colour. (This apparently reflected the fact that my blood was becoming less dark and was now taking on the more burgundy/maroon colour that it should be.)
In treatment six, something really encouraging happened. The nurse told me that, normally, at least with her LC/ME patients, the HELP apheresis machine requires the additional infusion of significant amounts of isotonic saline in order to help the blood flow more easily through the filter. At the beginning of my treatments, she said that my blood required the additional infusion of 1.5 litres of isotonic saline but that now the machine indicated that it required no additional infusion (beyond the standard 300ml that is used regardless). My blood was now flowing freely enough on its own.
I had seven sessions of HELP apheresis in total. Coming to Germany on my own was a big risk, and on a few occasions, my health was so poor that I wished I was back home. Ultimately, however, I am very glad that I took that risk.
Now, writing almost four months after my last treatment, I would estimate that my health improved a solid 20% from the HELP sessions and that I have maintained all the gains they gave me. My circulation is still improved, my fingernails remain a normal colour and my whole body feels like it is functioning noticeably better.
To be clear, however: I still very much have ME/CFS. I can still experience PEM. It is a lighter experience in some ways but, in general, a crash still very much feels like it always did. I have still had some of my worst symptoms, which in my case usually come at night, although these have been overall less frequent and intense. I still have autonomic dysfunction.
HELP apheresis has not been a magic bullet for me, but it is magical at what it does: returning the blood to its normal oxygenation capacity and flowing throughout the body as it should be. As a result, I feel lighter and can walk around more easily, I am cognitively sharper, sleep better overall and have colour in my face: my body, while still sick, feels like it is working better in a fundamental way.
While there are plenty of positive anecdotal reports online, such as in the Long Covid Apheresis Community Facebook group, there also exist reports of patients worsening significantly after HELP apheresis. Unfortunately, to my knowledge, we do not yet have research papers that examine the outcomes of HELP apheresis for those with LC and ME/CFS on a large scale.
However, one paper that looked at this question, albeit with a modest patient sample, was presented at the recent International Society for Apheresis conference in Berlin in early June. On page 62 of the conference booklet, there is the abstract for a talk, ‘First clinical results after apheresis treatment in Long Covid syndrome’, by Dr. Bücker from the nephrological practice in Osnabrück.
That study looked at the outcomes of 31 patients with Long Covid, who had at least two sessions of HELP apheresis (although the median number of treatments was 5). Patients were asked to evaluate symptoms on a five-tier Likert scale ranging from 1 (bad, very pronounced) to 5 (very good, asymptomatic) before and after the treatment and at a later follow-up point. From the abstract:
‘The overall rating increased from a score of 2 (range 1-3) before apheresis to 3 (1-5) after apheresis and to 4 (1.2-5) currently…. side effects were limited to 1 out of 144 treatment sessions, which resulted in a patient suffering from low blood pressure. 83 percent of the patients would recommend the treatment.’
These results are certainly encouraging but, given the cost of the treatment and the natural tendency of the desperately ill to seek improvements in their health, we urgently need larger-scale studies into the efficacy and safety of HELP apheresis for both LC and ME, in particular.
The main issues I experienced related to the intensity of the treatments, particularly the first three, which all created some kind of crash response, albeit with varying severities.
Drinking oral rehydration solution helped me greatly during those times. I wonder if ME/CFS patients risk experiencing a worsening of hypovolemia following apheresis treatment. This might be because, as previously inaccessible microcirculatory spaces suddenly become accessible again, there suddenly exists additional ‘space’ for the overall circulatory volume. The body, however, won’t have had a chance to catch up.
I normally drink 2.5 litres of Normalyte every day (indeed, I couldn’t do without it) but, after my early treatments, I found that drinking up to 3.5 litres was sometimes necessary to lessen the after-effects. I have struggled with hypovolemia throughout my illness and believe that I can sense when I experience it: a certain feeling that blood is not getting into the extremities of my body and brain.
I felt this symptom after the first few apheresis sessions and drinking extra oral rehydration solution provided relief. I wonder if some ME patients who struggle with apheresis do so because of issues related to blood volume, and whether they could tolerate the treatment better if they had a good supply of ORS. In line with this, I also wonder if microclotting might explain an additional (if much more minor) reason, alongside the renin-angiotensin-aldosterone axis downregulation, for the low blood volume that is so characteristic of this illness.
- In apheresis, the blood is removed from the body and then “washed” of unwanted substances such as microclots, antibodies, and pro-inflammatory factors and then returned to the body. HELP apheresis is widely used in Germany and has received more attention in ME/CFS and long COVID recently because of its ability to remove the microclots that some researchers believe are blocking blood flows to the tissues.
- 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.
- He noted that while there are plenty of positive anecdotal reports online, such as in the Long Covid Apheresis Community Facebook group, there also exist reports of patients worsening significantly after HELP apheresis. One study suggested that HELP apheresis can be helpful as well (see the Health Rising blog cited in Patrick’s account)
- Drinking oral rehydration solution helped him greatly during his time there.
- Apheresis is usually not covered by insurance and costs about 1400 Euros per treatment.
- Patrick is a published author and composer. His website is www.patrickussher.com and hismost recent book is The Myth of Primary Polydipsia: Why Hypovolemic Dehydration Can Explain the Real Physiological Basis of So-Called ‘Psychogenic Water Drinking’.
Apheresis in Germany
According to the nurse, the average number of treatments is five. From looking through social media discussions, it seems that most patients have between 4-8 treatments of HELP apheresis, although there are rare reports of some patients having 12 or more treatments. Some patients may choose to take blood thinning medication in addition although, in my case, I felt this to be too risky in the absence of careful medical supervision.
Typically, patients seem to have a treatment once a week, although I chose to spread them out further, having 7 treatments over around 70 days. My guess is that the ideal natural end point of the treatment is the moment the blood turns a normal burgundy/maroon red again.
It is important to note that HELP apheresis does not just remove the microclots and clotting factors. It also removes pathogens, toxins, and LDL cholesterol. There will always be, therefore, some residue in the filter at the end of a session, even if the worst of the microclots are already long gone (although you can expect noticeably less residue at that point). Therefore, it seems to me that the color of the blood is a good indicator of the need for treatment.
HELP apheresis is a treatment with a long history in Germany and one with a proven safety track record in patients with serious heart issues and hypercholesterolemia. It has been used to treat hypercholesterolemia as well as various serious heart issues for decades. Its use for Long Covid patients was pioneered early in the pandemic by Dr. Beate Jaeger in Mulheim and her paper on its applications in this regard is well worth reading.
The treatment is offered in various dialysis centers around Germany, the full list of which can be found here (for those interested, it is believed that Dr. Jaeger, having closed her Mulheim clinic, is opening a new clinic for HELP apheresis in Bad Aibling before too long). The treatment is also offered in Switzerland and in Cyprus.
The costs of the treatment vary from clinic to clinic. In Germany, the prices appear to be the cheapest at around 1400 Euro per treatment. While this is still unfortunately very expensive, the bulk of this is simply to cover the cost of the single-use filter and, when the nursing costs are also taken into account, the clinic does not make much, if any, profit.
The cost, and lack of insurance coverage, of the treatment will sadly be a deterrent for many with ME/LC. We can only hope that, if this treatment is validated in the future, it could one day be offered to patients both on insurance and through national healthcare systems. It is certainly an exciting example of a conventional medical treatment that could improve substantially the quality of life of many ME and LC patients.
I am grateful to nurse Lisa for the excellent and warm-hearted care that she provided me throughout my treatments, and to Dr. Satanovskij for his kindness and also his patience in answering my never-ending questions. Anyone wishing to make an appointment in Bayreuth is welcome to contact Dr. Satanovskij directly.
HELP apheresis treatment can be a scary proposition, especially for a patient with an illness like ME/CFS. I doubt I have ever been more anxious than when I first saw my blood going through the line into the filter: I felt like I was going to lose consciousness.
My immediate reaction was to beg the nurse to stop the treatment. While Lisa put her hand on my shoulder, Dr. Satanovskij also came in to reassure me, telling me that HELP apheresis is a treatment of very low risk and much safer even than dialysis. He even told me that there are Sheikhs in the Middle East who have weekly sessions using their own private HELP machines.
As I looked at my blood seeping out of me in what I was pretty sure were to be my last moments on earth, I pondered with some perplexity the kinds of things that some people do for fun. But then I tried to settle myself down and decided to continue. I’m glad that I did.
Patrick Ussher is an Irish ME/CFS patient who has had the illness for five years. He is a composer of music in a contemporary classical style and his music can be listened to on Spotify and Artlist. He has edited books on modern applications of Stoic philosophy and also written a book on the similarities between Buddhism and Stoicism and on neuroplasticity-based recovery for POTS. He has also worked on a new edition of his late mother’s book on living with breast cancer, Following the Pink Ribbon Path. His website is www.patrickussher.com.
Patrick’s most recent book is The Myth of Primary Polydipsia: Why Hypovolemic Dehydration Can Explain the Real Physiological Basis of So-Called ‘Psychogenic Water Drinking’. In that book, he challenges the condition currently known as ‘psychogenic water drinking’ (aka: ‘Primary Polydipsia’), a condition in which it is currently assumed that people drink enormous quantities of water in the absence of physiological need and just because of mental illness.
The book presents an alternative hypothesis, namely that it is the excessive thirst experienced by some ME/CFS patients that has always, at least for the most part, been historically misdiagnosed as ‘psychogenic water drinking’. The book maps out a kind of polydipsia that may be specific to ME/CFS, POTS, and Long Covid and which stems from, among other things, the low blood volume that is so characteristic of those illnesses. That book is available for free download from its website.
Note from the author: Some readers of this blog might be aware that I previously wrote a book about POTS, an illness I had in 2014-2015 and from which I recovered using a brain-retraining program. My book tried to map out why that neuroplasticity program might work for POTS and related conditions.
Unfortunately, after three years of good health, I became ill again in 2018, this time with ME/CFS. This time around, brain retraining has helped but has never led me to get better beyond a certain point, as it did in 2015.
My situation has also been complicated with serious gait-related issues stemming from a car incident and knee injuries that have made it much harder to recover and which have involved a long, arduous, and still ongoing rehabilitation journey (indeed, this is what caused the return of my illness: the whole thing has been a real ‘Book of Job’ experience!).
I still believe that it is important to consider the neuroplasticity side of POTS and related illnesses and, alongside publishing various changes I would make to my book now, I decided to keep my POTS book live on Amazon, at the lowest possible price, as I believe that it can still be a helpful guide for those pursuing neuroplasticity options while also adding to the discussion around what might underlie, or at least drive in part, POTS and related illnesses.
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