Aphaeresis/ Apheresis (for removal of microclots)

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Update from Dr Asad Khan (AK) who is a respiratory consultant in Manchester and he fits the MECFS criteria. He is in Germany undergoing HELP apheresis.
This YouTube channel is good and MECFS has featured a lot.

Rough timeline for video:

0-4 mins problem of identifying LC drivers

4-7.15 AK gives hypotheses as he understands it so far

7.15-8 outline of procedure

8-12 discussion on why microclots May drive LC inc PEM, waxing and waning symptoms etc

12-15.20 AK personal experience

15.20-18.26 microclots as driver of LC and MECFS (lots here on MECFS)

18.26-21.54 Microclot markers (none) and why standard clotting measurements are usually in normal range

21.54-25.48 venous oxygen saturation

25.48 where HELP apheresis available

29.44 Research agenda in next few weeks

39.32 way forward for LC then MECFS

39.44 conclusion
 
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Haven’t watched all of this video but the bit that jumped out at me was around 33min where he suggests that it might be too difficult to blind people and to have sham apheresis controls.

Rituximab and other ME/CFS trials have shown us that double-blinding is necessary if possible. He recognises the need for objective* outcome measures, which is good, but double-blinding would be much better and I don’t see why it wouldn’t be possible in this case, even if it would be difficult. There must be many people who can’t afford or access this treatment who would be willing to volunteer for an RCT if they knew they had a 50% chance of getting the treatment being tested. Perhaps it might be possible to offer free HELP apheresis at a later date to those who are randomised into the sham treatment arm.

I really hope they do this properly and don’t cut corners in a rush to convince themselves and others that they have a treatment that works, instead of testing it properly.

[*edited to add “objective”]
 
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The video and the FB group say that Professor Pretorius is going to Germany this month and testing new patients before, during and after. Dr Khan and others (?) also going to measure anything measurable starting within next two weeks. There’s over 7000 on the waiting list mostly self funded so hopefully a big data set will emerge.

It seems that they are not even quite sure what is being removed or how to identify who might benefit yet. All they see are the microclots.

Something seems to be working but they don’t know why. By taking a shedload of data they hope to quantify changes objectively.

Again at the moment LC seems plagued by ‘normal’ test results that could mean you still are sick.
 
Dr Asad Khan looks like a lovely person, and he was trying hard not to overstate the results of the treatment. It was sounding a bit underwhelming. People with Long Covid are still very much in the window where natural recovery is a reasonable expectation. And Dr Khan was making it clear that mostly people aren't reporting cures; the improvement seems quite limited, and some people haven't seen a benefit even after 8 or more treatments. Dr Khan mentioned that he had a relapse (in the last week or so) and had had to go on steroids. It's not yet sounding like the treatment is doing more than what we might expect from an expensive placebo.
 
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In the video intro it is highlighted how heterogeneous LC is. The same issues we see with MECFS where there are ‘layers’ or comorbidities that give everyone a slightly unique experience. Dr Khan noting that the strongly dysautonomia subgroups seem less responsive. Around 50-60% are reportedly recovering fully according to FB admin. Temporary?

@Hutan mentions illness stage. If they researched this on pwME I would like to see < 2 years cases vs longer term. Although identifying new cases that early on hasn’t been a strong point. Does MECFS (and LC if different) take on a different character after a while? Has the initial driver ceased and a feedback cycle now just keeps it going.

Let’s hope that they do a thorough job at following patients through with multi center studies too.

Even if it’s not a cure but a treatment that could improve function by say 50% and repeated every few months that’s ok too. Needed are objective measures that rule out placebo and then a reliable marker to identify potential responders.
 
The video is very interesting, and I agree, Dr Khan is sincere and careful not to raise false hope, but at the same time he's going on the media talking about his experiences and as a result the numbers on waiting lists have rocketed up.

At about 7 minutes Dr Khan says that the antibodies stimulated to be produced by the spike protein of Covid cause the microclots of fibrin that are resistant to lysis by heparin, and that's why you need apheresis to physically remove the microclots.

Yet at 34 minutes he's suggesting patients discuss trying anticoagulants with their doctors.

Also at around 35 minutes he says the ones who have done best on apheresis are those who continue to be strictest with pacing, resting, healthy diet etc. So it's impossible at this stage to tell whether simply taking someone out of their busy home environment to a place where they can focus on pacing etc, and the hope given by having a new treatment, may be giving a false sense that it's the treatment that is leading to the improvements.

Early days. I hope they can get a double blind trial set up soon, as well as doing more thorough pre and post testing of all sorts of biological measures.
 
I think the most interesting part here is a potentially novel physical finding in these microclots. I don't understand the science well enough but it sounds like this is a new phenomenon of some sorts, that they're still trying to work out.

But I agree, the results so far are receiving way more hype than they merit. Dr. Khan has done like 15 rounds of apheresis and is still symptomatic, right? Color me unimpressed. Hopefully I am wrong.
 
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Good talk by Prof Pretorius and how research shows some contribution by microclots to other autoimmune disease like RA, lupus, diabetes and Alzheimers but not to the same and even greater extent of having covid infection. She admits the association to ME is unknown but good to know there will be a study on this. She is clear that she does not know how many treatments are required and what type and dose of anticoagulant medication is recommended as she freely admits she doesn’t have the data and she would have to discuss this with Dr Jeager doing the apheresis in Germany.

I feel quite unsettled as a former medical professional by the level of advice Dr Khan is giving in his video (even though he gives caveats, the overwhelming theme is the microclotting process is causing all your long covid problems and possibly ME too) Thousands of people have signed up. It needs to be put through a sound scientific process with good pre and post outcome measures which he says is happening but is having to do it in a hurry, while being unwell (yikes!). They do need a control treatment arm of sham apheresis which he states no one will want to do because they are having to pay big bucks for it to hopefully relieve their illness. I think it would be quite easy to set one up to blind the patient, blinding the technician might be difficult but not impossible but early days and it’s a start. But this scientific evidence will be needed for doctors and healthcare providers to start looking at this being a treatment option.

As a clinician I would want a lot more information to help inform on the risks/benefits of anticoagulation to a patient as I think he really doesn’t state the risks of bleeding from falls causing brain injury etc. something you would not want to add to your illness.
 
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hibiscuswahine said:
As a clinician I would want a lot more information
Click to expand...

I would go further. This looks to me like very irresponsible talk about something that is likely to turn out to be an artefact.

There is no excuse for doing anything other than properly controlled studies. Especially if coagulation is involved. The risks are very high in both directions.

It seems strange that this sort of thing is going on in Germany and maybe other countries where medical ethics should be well advanced.
 
Private treatment costs money regardless, can understand why Long Haulers are queuing up and prepared to pay.

Exploitation? Opportunism for private clinics? Researcher ambition? Patient enthusiasm/hype? Not sure where the line gets crossed but in a few weeks/months we will be better placed for a bit of hindsight.

Waiting to see how Dr Amy Proal approaches her MECFS study in January.
 
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