Is Apheresis an effective treatment for Long Covid and ME?

[Countrygirl]

Markus has shared this newspaper article:

 

[splusholia]

Is there a possibility that this will be available for M.E. patients? Is it expensive? Will the studies take ages? I’ve kind of given up hope after six years bedridden, but it would be nice to have something...

 

[perrier]

Martin has been on twitter
He says he has no clots or fibrin in the blood
He did first treatment
Any further news?
We wish him all the best in the world!

Martin says blood needs to be examined and nothing is definite at this point. We wish him the best!!

 

[Countrygirl]

Martin has been on twitter
He says he has no clots or fibrin in the blood
He did first treatment
Any further news?
We wish him all the best in the world!

Is this back to the drawing board for us then?

Hope Prof Pretorius finds 'something' in his blood.

Maybe Dr Les Simpson was right and we have abnormally small capillaries though which the stiff and misshaped RBCs can't pass.

 

[SWAlexander]

 

[Consul]

But didnt they already announce they had done ME/cfs patients (non LC) that did improve from this?

Also is there a way to increase RBC deformability?

 

[andyguitar]

Is there a possibility that this will be available for M.E. patients? Is it expensive? Will the studies take ages? I’ve kind of given up hope after six years bedridden, but it would be nice to have something...

If the clinical trials show it to be effective for me/cfs I would expect it to be available. Cost would be at least £1,200 but if available on the NHS it would be free. I'm hopeful the studies wont take more than 6-12 months.

 

[Countrygirl]

But didnt they already announce they had done ME/cfs patients (non LC) that did improve from this?

Also is there a way to increase RBC deformability?

Yes, two improved and one had been bedridden for 7 years.

Yes, 4 gms daily of EPO daily makes RBCs more deformable.

 

[splusholia]

If the clinical trials show it to be effective for me/cfs I would expect it to be available. Cost would be at least £1,200 but if available on the NHS it would be free. I'm hopeful the studies wont take more than 6-12 months.

Thank you. Hope is always welcome!

 

[GlassCannonLife]

Yes, two improved and one had been bedridden for 7 years.

Yes, 4 gms daily of EPO daily makes RBCs more deformable.

Hm I wonder if ARA-290 also has this effect? Do we know which region of EPO is responsible for this?

 

[hb8847]

He mentioned a venous oxygen saturation test which was diagnostic for Long Covid - easy to do it seems - his level was 32, and normal was 65-75 - I'm wondering if this test is this something we could use for ME/CFS as well?

Sorry if this has already been discussed but is there any estimate on the percentage of ME sufferers who have similarly low levels of venous oxygen saturation?

 

[5vforest]

Hi @Martin aka paused||M.E. , I hope you are feeling OK and not too badly crashed from yesterday. Please rest up, we will all be waiting patiently for your update but there is no rush.

 

[Countrygirl]

Hm I wonder if ARA-290 also has this effect? Do we know which region of EPO is responsible for this?

@GlassCannonLife If you flip back to my post #468 you can download a file of my notes on Dr Les Simpson's book Ramsay's Disease which may answer your questions.

 

[Countrygirl]

Asad's latest tweets this morning:


Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
16h
Thank you. Happy to speak to anyone interested in helping end this suffering. #LongCovid #MECFS
Quote Tweet
Sam McIntyre
@SamMc413
· 17h
Replying to @sajidjavid @CGATist and 2 others
@doctorasadkhan and @resiapretorius are making great progress uncovering the potential cause of #LongCovid which could have huge implications for #MECFS also.

Please support them however you can



Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
1h
It’s my #COVIDversary this weekend. I’m much better having forked out thousands for HELP apheresis in Germany but work & any semblance of family life is a long way off. I still have #POTS #PEM & have to lie down frequently to get blood to my head 4/n


Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
1h
To understand the murky detail of how frontline workers were thrown to the wolves watch this film I made ages ago with my buddy
@gezmedinger
featuring #PPE champions

5/5
youtube.com
The Scandal of Insufficient PPE: Why Healthcare Workers Were Betrayed...
We all know frontline workers such at increased risk of contracting Covid-19 due to the nature of their work. But did you know that so far in the UK, 1500 he...

 

[GlassCannonLife]

Asad's latest tweets this morning:


Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
16h
Thank you. Happy to speak to anyone interested in helping end this suffering. #LongCovid #MECFS
Quote Tweet
Sam McIntyre
@SamMc413
· 17h
Replying to @sajidjavid @CGATist and 2 others
@doctorasadkhan and @resiapretorius are making great progress uncovering the potential cause of #LongCovid which could have huge implications for #MECFS also.

Please support them however you can



Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
1h
It’s my #COVIDversary this weekend. I’m much better having forked out thousands for HELP apheresis in Germany but work & any semblance of family life is a long way off. I still have #POTS #PEM & have to lie down frequently to get blood to my head 4/n


Dr Asad Khan FRCP FRACP Flag of Palestinian TerritoriesFlag of New ZealandFlag of IndiaFlag of United Kingdom#FBLC
@doctorasadkhan
·
1h
To understand the murky detail of how frontline workers were thrown to the wolves watch this film I made ages ago with my buddy
@gezmedinger
featuring #PPE champions

5/5
youtube.com
The Scandal of Insufficient PPE: Why Healthcare Workers Were Betrayed...
We all know frontline workers such at increased risk of contracting Covid-19 due to the nature of their work. But did you know that so far in the UK, 1500 he...

Ah, didn't realise he's still so ill - must be moderate judging off what he said

 

[Countrygirl]

As Prof Pretorius is going to examine Martin's plasma, I hope she is aware of Prof Ron Davies's finding of the protein in the plasma that is crippling function, believed to bean exosome.

 

[Countrygirl]

Ah, didn't realise he's still so ill - must be moderate judging off what he said

It doesn't seem to have cured his PEM or POTS so far. How many cycles has he had? About 11?

 

[GlassCannonLife]

It doesn't seem to have cured his PEM or POTS so far. How many cycles has he had? About 11?

Yeah and he said "work & any semblance of family life is a long way off", which sounds at least moderate I'd assume.

Not sure how many but yeah I thought at least 10, maybe between 11 and 15 or something?

It would be interesting if he managed to cure the LC component (blood clots), if it is not present in ME, and just had normal moderate ME now.? I guess we'll see how he goes if he keeps doing treatments

 

[BrightCandle]

I recall 11 being the count so far. He is still on the more severe end of moderate. Its a lot of treatments, that is £14300 not including all the trips to Germany. Most severe people would pay quite a bit to be moderate but that is a lot of change for something that so far doesn't look like its working all that well.

 

[junkcrap50]

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.