Is Apheresis an effective treatment for Long Covid and ME?

Countrygirl

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(Almost) on topic:

Asad has just sent this. I had to read it twice to believe it.

The following patients are excluded from NHS referral for medical support if they have Long Covid and one (or more) of the following: (!)

1637578779967.png
 

junkcrap50

Senior Member
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1,392
I wonder if CytoSorb (https://cytosorb-therapy.com/) is thought to be used in Long Covid patients. It has been used in many studies for severe Covid (https://cytosorb-therapy.com/en/covid-19/). With the sudden new interest of HELP apheresis, and HUGE demand for it, I wonder if Cytosorb's company would be interested in studying it with Long Covid. It's available around the world, most commonly in Germany/Europe & India. But it is still only granted emergency use authorization.

There may be still more to filter out besides the microclots, for those that don't respond to help apheresis. And hopefully ME/CFS patients can piggyback off the long covid demand.
It would be a big money maker for them. Right now there's 7,000 patients on the help apheresis waiting list, with each infusion costing $1300, totaling $9.1 million. Then multiply the how many infusions/sessions are needed, say average of 5, that's $45.5 million or more. I don't see why there wouldn't be 7,000 more Long Covid patients signed up for several Cytosorb sessions. There's huge demand for LC treatment.

It would also be easier for patients and much more widely available. All it needs is a simple blood pump, looking at some of the pictures. So nearly any place could do it.

I may try to draft a letter to Cytosorb describing the potential and the current research/treatment with HELP Apheresis. It could also be sent to doctors or clinics in Europe who use Cytosorb. I'd gladly let anyone else who is better at writing than me write it as well.

Anyone on twitter could share it to the #TeamClots people as an FYI and possible solution for those nonresponsive to HELP.
 

Countrygirl

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Dr William Weir has just sent me his short appraisal of his visit to the Mulheim clinic.

He has given me permission to share it with you.

SHORT APPRAISAL OF MY VISIT TO MULHEIM TO MEET DR BEATE JAEGER AND HER TEAM – Dr William Weir

One of the ongoing issues with ME/CFS is what causes the pathology underlying the symptoms of the disease. It is axiomatic that without a recognisable cause, effective treatment for any disease is not possible. During my visit to Mulheim I realised that Dr Jaeger and her impressive team had identified one of the major pathological components of ME/CFS. I was very encouraged by what I saw and more than impressed by Dr Jaeger. Her intelligence and humanity were qualities she had in abundance, particularly her ability to think "outside the box". Her initial interest had started with Long Covid, particularly in relation to the tendency for Long Covid patients to develop blood clots. There was therefore a possibility that such blood clots were obstructing blood flow in the finer blood vessels of the body, namely the capillaries. Reduced capillary blood flow has long been suspected as the cause of many of the features of ME/CFS and the same would appear to be the case with Long Covid. Furthermore radiological studies done some years ago in ME/CFS patients had shown evidence of reduced blood flow, particularly involving the brain stem (the part of the brain which governs most of the subconscious functions of the body such as blood pressure, heart and respiration rate). Logic therefore dictated that these “micro blood clots” should be removed, also that Long Covid and ME/CFS had a lot in common. Dr Jaeger was also applying a treatment with which she was already familiar, namely HELP apheresis. This treatment has been used since the 1980s to remove excessive levels of lipid from the blood of patients with coronary artery disease. Dr Jaeger therefore decided that this could be adapted to remove microclots from the circulation of Long Covid patients, by a sophisticated process of filtration. The technique involves continuous removal of blood from one arm vein whence it is filtered, before being returned to the opposite arm. So far this approach has been very successful, and she is now beginning to treat ME/CFS patients successfully as well, indicating that it is very likely that Long Covid and ME/CFS have very similar underlying pathology. This said, there may be subcategories of ME/CFS in which it is not microclots which are causing the capillary obstruction, but other forms of cellular debris including lipid globules.

Dr Jaeger’s approach was not simply empirical. When I was visiting there was also a laboratory team from South Africa, and a scientist from the Max Planck institute, whose main aim was to identify the nature of the debris filtered from the blood of patients under treatment. The South African team were able to demonstrate the presence of much circulating debris, comprised mainly of microscopic clumps of fibrin, platelets and red blood cells, something not seen in normal healthy blood. Some patients needed as few as 2 sessions of apheresis, whilst others required up to 10 sessions for this debris to be filtered out of their blood. Clinical recovery in virtually all the Long Covid cases was substantial, as was the case with the smaller number of fully treated ME/CFS patients treated to date.

The acid test of Dr Jaeger’s work will be to demonstrate not only subjective symptomatic improvement but also scientifically objective measures of improvement. Sophisticated scanning techniques as well as the recovery of fingerprint patterns will help prove the effectiveness of her treatment. I am cautiously optimistic that, when Dr Jaeger’s results appear in the medical literature, HELP apheresis will then be adopted universally as standard treatment for ME/CFS and Long Covid. Time will tell and fingers crossed!



WRCW
 

junkcrap50

Senior Member
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Dr William Weir has just sent me his short appraisal of his visit to the Mulheim clinic.
I'm not familiar with Dr. Weir. Is he collaborating with Dr. Jaegar & Dr. Pretorius's research as about a dozen other doctors around the world are? Or did he just visit to see what's going on? Online it says he's retired. With his experience with ME/CFS, he seems quite confident about HELP apheresis!
 

Countrygirl

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I'm not familiar with Dr. Weir. Is he collaborating with Dr. Jaegar & Dr. Pretorius's research as about a dozen other doctors around the world are? Or did he just visit to see what's going on? Online it says he's retired. With his experience with ME/CFS, he seems quite confident about HELP apheresis!

He is retired from the Royal Free Hospital but works full time as a NHS locum consultant.
He has had a special interest in ME for 30 years, and is probably the UK's most informed doctor on the disease.
He runs an ME clinic from my home at the weekends and patients come from all over the UK to have an appointment with him. Asad was also due for an appointment with him when he was offered the opportunity to go to Germany.
He is continuing to keep in close contact with Dr Jaeger and has been advising on publication.
 

MonkeyMan

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424
Dr William Weir has just sent me his short appraisal of his visit to the Mulheim clinic.

Clinical recovery in virtually all the Long Covid cases was substantial, as was the case with the smaller number of fully treated ME/CFS patients treated to date.

This is certainly encouraging, but I'm confused: I thought I saw other reports saying that HELP Apheresis is not proving to be very successful, at least in ME/CFS.

Can someone please clarify? Thank you.
 

Countrygirl

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This is certainly encouraging, but I'm confused: I thought I saw other reports saying that HELP Apheresis is not proving to be very successful, at least in ME/CFS.
Can someone please clarify? Thank you.
@MonkeyMan

Here is Markus's response to me on the FB HELP site concerning the success rate of the 200 treated to date:

It is (from the first 18 and then 100 patients) more like 50-60% cured, 30-40% cured except irreversible damages and 5-10% respond slow or not at all.

Two ME patients, as far as I know, have completed their treatment. One who was bedridden for 7 years was able to walk after only 4 cycles of treatment and the second, who had been ill for many years, required 14 cycles to achieved significant improvement. We are waiting to hear Dr Jaeger's verdict on Martin's response, given that it is 'something' other than micro-clots in his plasma. I have been told that the debris and the 'something other' will also clog the capillaries, just like the micro-clots.

I have also been informed from a reliable source that it is people whose ME began after a bout of glandular fever who have the Covid-like micto-clots, but I don't know how many patients that piece of information is based upon.
 

keepontruckin

Senior Member
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216
I would have thought it would be easy to find out if apheresis is helpful for me cfs. There are a number of clinics with apheresis equipment in Europe that have been around for years. Are there about 12 of these clinics in Switzerland, Germany etc?? Some of them have treated people with Lyme disease and that included post lyme disease which is me cfs right?. For example, Dr. Klinghardt has been running a clinic for years caring for lyme patients and you can expect me cfs as well. Clinic in South Africa too. They screen for heavy metals parasites etc. It seems people with me cfs are more likely to get lyme disease. I heard they got better equipment about 5 years ago. But I have not heard about results. Is that because their apheresis machines are not screening for the same things as Help Apheresis machines
 

Countrygirl

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Update from Markus:

Today I was able to join the bi-weekly call of doctors that treat LC with Help Apheresis.
I was really a bit down because of all the long working hours lately and the flu I had last week, but wow did this call improve my mood!
The findings of last weeks' study were discussed (sorry news blackout until published) and they are impressive!

But the best news I got today from Mülheim, was about a favourite patient of mine, 29 year old girl, bedbound and in a wheel chair from extreme fatigue, she had lost the ability to talk almost fully, had spasm in the face and arms and couldn't feel/move one leg and had many other symptoms of v-LC.

I remember how we carried her around and how we turned off the lights for her, gave her a sip of coffee to reduce her constant headache at least a bit. She was absolutely lovely, but it was heartbreaking.
Well! After 5 Help treatments all those symptoms are starting to disappear, one by one, slowly slowly.
I will try to get her testimonial, as it is breathtaking and inspiring.

Her Dad, an MD himself, took my contact details in Mülheim - if you read this, please contact me, I would love to share a bit of her story with the group - I understood we need more voices, more testimonials here.
Yes, it is still very early and most people are still in treatment and it is too early for a testimonial that really makes sense if not 3-4 months (or a year for Neuro) passed, but every little message gives LCs more hope to get through the day.

News like this is what keeps me going - seing people getting more healthy again and getting a big part or their full life back, just never gets old.
129Katy Bruce, Rosie Cox and 127 others

19 comments
 

junkcrap50

Senior Member
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1,392
Thanks for cross posting stuff @Countrygirl! Great report!

I would have thought it would be easy to find out if apheresis is helpful for me cfs. There are a number of clinics with apheresis equipment in Europe that have been around for years. Are there about 12 of these clinics in Switzerland, Germany etc?? Some of them have treated people with Lyme disease and that included post lyme disease which is me cfs right?. For example, Dr. Klinghardt has been running a clinic for years caring for lyme patients and you can expect me cfs as well. Clinic in South Africa too. They screen for heavy metals parasites etc. It seems people with me cfs are more likely to get lyme disease. I heard they got better equipment about 5 years ago. But I have not heard about results. Is that because their apheresis machines are not screening for the same things as Help Apheresis machines
I came across some of those clinics in europe searching about apheresis. They make pretty comprehensive claims about what they can filter out - biotoxins to viruses to cytokines to heavy metals to IgG autoantibodies to CRP to lyme. But I could never find what filter they use. They also say they can take a sample of your blood to analyze all the things that will be removed.
 
Last edited:

GlassCannonLife

Senior Member
Messages
819
Update from Markus:

Today I was able to join the bi-weekly call of doctors that treat LC with Help Apheresis.
I was really a bit down because of all the long working hours lately and the flu I had last week, but wow did this call improve my mood!
The findings of last weeks' study were discussed (sorry news blackout until published) and they are impressive!

But the best news I got today from Mülheim, was about a favourite patient of mine, 29 year old girl, bedbound and in a wheel chair from extreme fatigue, she had lost the ability to talk almost fully, had spasm in the face and arms and couldn't feel/move one leg and had many other symptoms of v-LC.

I remember how we carried her around and how we turned off the lights for her, gave her a sip of coffee to reduce her constant headache at least a bit. She was absolutely lovely, but it was heartbreaking.
Well! After 5 Help treatments all those symptoms are starting to disappear, one by one, slowly slowly.
I will try to get her testimonial, as it is breathtaking and inspiring.

Her Dad, an MD himself, took my contact details in Mülheim - if you read this, please contact me, I would love to share a bit of her story with the group - I understood we need more voices, more testimonials here.
Yes, it is still very early and most people are still in treatment and it is too early for a testimonial that really makes sense if not 3-4 months (or a year for Neuro) passed, but every little message gives LCs more hope to get through the day.

News like this is what keeps me going - seing people getting more healthy again and getting a big part or their full life back, just never gets old.
129Katy Bruce, Rosie Cox and 127 others

19 comments

I can't help but look at reports like this and just feel a bit discouraged that it won't work for ME and nobody seems to care about treating us vs LC, despite the number of people with each condition being similar (IIRC).

Can these doctors not spend 20-40 % of their effort on treating ME specifically? Make it more of a unified front? Feels like we're just a small afterthought or something they include just so they can use an extra hashtag on twitter.

Depressing as hell
 

SNT Gatchaman

Senior Member
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Location
New Zealand
It's true we don't know what proportion of ME patients apheresis may help. But the knowledge already gained is accelerating methods and insights that will be directly relevant to ME patients.

Prof. Pretorius has indicated that a study into ME patients will start in January in South Africa. I can also assure you that there are associated researchers who will be looking at LC and ME patients earlier than that.

She has also confirmed the broad context of recent findings with an understated tweet this morning.

 

Countrygirl

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Location
UK
This updated treatment protocol has been placed on the internet from the Mulheim clinic:

I was interested to read in an email from the clinic that people with EBV-triggered ME have VERY clotty blood.
 

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