Blog: 'Summary so far of "Something in the blood"' by Simon McGrath

Simon M

Simon M

Senior Member (Voting Rights)
EDIT: SUMMARY OF LATEST VERSION OF BLOG POSTED INSTEAD
Moderator's note: This post and relevant replies have been copied from this point, https://www.s4me.info/threads/nih-a...h-and-5th-april-2019.7745/page-14#post-161538, in the Accelerating Research on ME/CFS Meeting thread.

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Something in the blood​
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It is remarkable that four independent groups have now found that a factor in the blood can affect cell metabolism/mitochondria in ME/CFS and transfer the effect to healthy cells. Here is a summary of the provisional findings.

Fluge & Mella
The first to find the effect were Dr Oystein Fluge and Professor Olav Mella in 2016. They were studying energy production in the cell, a logical thing to do when trying to understand an illness where energy is in such short supply.
....
What they found was, surprisingly, that the muscle cells produced more lactic acid and burned more oxygen when they were incubated with ME/CFS serum than when incubated in serum from healthy controls. And the effect was particularly strong when the cells were made to work hard.
....

> Also Ron Davis, Karl Morten, Bhupesh Prusty with their different approaches that also found an effect.

....
So we have four groups finding that a factor in ME/CFS blood that has an effect on cells. These are still early days: only one study has been published so far, the sample sizes are relatively small and the findings need to be confirmed. But if things pan out, this development could prove to be an important step in understanding the biology of at least some types of ME/CFS.

Read the full blog
 
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Thanks for the summary @Simon M.

Perhaps we should try to persuade some of the BPSers to volunteer to have blood transfusions with blood from people with ME, rather like when John Gummer MP tried to make his 4 year old daughter eat a beef burger on TV in an attempt to persuade the public that British beef was safe during the BSE crisis (http://news.bbc.co.uk/onthisday/hi/dates/stories/may/16/newsid_2913000/2913807.stm).

Thinking of CJD, it occurs to me that knowing there is something in the blood does not necessarily mean that it will be easy to find. Is there a blood test for CJD yet?

And is there is any published research on the effects of ME patients receiving blood transfusions?
 
then, what are the "blood cleaners" - of any help ?

sebastian kneipp (with the water) ordered every patient seeing him, to first of all take juniper berries
starting slowly, 2, 4, ... up to i thnk 16 per day
according to him a brilliant blood cleanser.

(hope, i remember right and it was him)
 
Robert 1973 said:
Thanks for the summary @Simon M.

Perhaps we should try to persuade some of the BPSers to volunteer to have blood transfusions with blood from people with ME, rather like when John Gummer MP tried to make his 4 year old daughter eat a beef burger on TV in an attempt to persuade the public that British beef was safe during the BSE crisis (http://news.bbc.co.uk/onthisday/hi/dates/stories/may/16/newsid_2913000/2913807.stm).

Thinking of CJD, it occurs to me that knowing there is something in the blood does not necessarily mean that it will be easy to find. Is there a blood test for CJD yet?

And is there is any published research on the effects of ME patients receiving blood transfusions?
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PWME will be queuing up to donate blood for this.
 
As long as there is a nice comfy bed to do so on.;)

Although, having given it 20 seconds thought, I suspect that some of us may not wish to deliberately give someone else ME - even if that person is a total %$£^.

Even in the name of science, or activism.
 
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Wonko said:
As long as there is a nice comfy bed to do so on.;)

Although, having given it 20 seconds thought, I suspect that some of us may not wish to deliberately give someone else ME - even if that person is a total %$£^.

Even in the name of science, or activism.
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I’m grumpy today so honestly there are a handful of people I can think of where it would be tempting. But on a better day no. You’re a better man than me @Wonko
 
NelliePledge said:
I’m grumpy today so honestly there are a handful of people I can think of where it would be tempting. But on a better day no. You’re a better man than me @Wonko
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I'm currently a turnip - I appear to be going through a vegetable phase lol

I had to restrain myself from posting recently in the glass half full thread as the idea of being planted is quite appealing, and not everyone needs to know that ;)
 
Robert 1973 said:
Thanks for the summary @Simon M.

Perhaps we should try to persuade some of the BPSers to volunteer to have blood transfusions with blood from people with ME, rather like when John Gummer MP tried to make his 4 year old daughter eat a beef burger on TV in an attempt to persuade the public that British beef was safe during the BSE crisis (http://news.bbc.co.uk/onthisday/hi/dates/stories/may/16/newsid_2913000/2913807.stm).

Thinking of CJD, it occurs to me that knowing there is something in the blood does not necessarily mean that it will be easy to find. Is there a blood test for CJD yet?

And is there is any published research on the effects of ME patients receiving blood transfusions?
Click to expand...

It's only my own experience. Before diagnosis, in fact a year before ME was on my radar I had a triple bypass. Obviously I didn't feel great before the op but after the op I felt great. Lots of energy, really happy. After 2 months I gradually had less and less energy until, finally going to the GP and being diagnosed.

It's my feeling that the transfusion sorted me out. I can't obviously prove it but that is my strong impression. Of course the OT said that the ME was a reaction to my op! She forgets about the 2-3 month period when I felt great, full of energy and smacking a golf ball 6 weeks after the op.

If I could I'd have a transfusion tomorrow.
 
Interesting stuff!

A few things I found when thinking about plasma replacement (how do they do it):

When donating plasma they recommend you boost your protein and fluid intake. Seems like good advice for pwME in my personal experience too.

The word is plasmapherisis.
 
Even better than blood transfusions or plasmapheresis is this technology (copied from a comment at PR). They are specialized filters for dialysis machines:

https://forums.phoenixrising.me/threads/research-re-exosomes-and-me-csf.75840/post-2196070
https://forums.phoenixrising.me/threads/research-re-exosomes-and-me-csf.75840/post-2196169

Cytosorbents - cytokine adsorber "Cytosorb"
-American company that is going gangbusters in Germany especially, with the Cytosorb used in ICU’s to treat systemic sepsis. On their website, their Cytosorb user’s group (most active in Germany) that waxes poetic on the ability of this cartridge to filter out cytokines from the blood. Quite dramatic physiological responses in these critically ill ICU patients. If M.E. is so closely related to Systemic Inflammatory Response Syndrome and low-grade sepsis, maybe we're ideal candidates too?
- Presentation showing how cytokine adsorption works. This is from the Feb 2019 presentation. I believe this could be a viable short-term treatment for ME patients. See especially slides 7-14: https://cytosorbents.com/wp-content...bents-Investor-Presentation-February-2019.pdf
- Summary of the Cytosorb (cytokine adsorber) therapy: https://cytosorb-therapy.com/the-therapy/
- Cytosorb literature database: https://literature.cytosorb-therapy.com/

Aethlon Medical - Exosome adsorber "Hemopurifier"
-It started off as an adsorber for viruses, now also targeting cancerous and non-malignant exosomes. They state: "We are also investigating the ability of the Hemopurifier to capture glycosylated bacterial toxins and tumor-derived exosomes that promote cancer progression and treatment resistance. Additionally, we are the majority owner of Exosome Sciences, Inc. (ESI), a Company that is focused on the discovery of exosomal biomarkers to diagnose and monitor life-threatening disease conditions that may be current or future therapeutic targets for Aethlon Medical."
- https://seekingalpha.com/filing/4061856 Ignore the investor stuff, and jump down to, "The Mechanism of the Hemopurifier". You can also do a search (Control “F”) in this document for “exosomes” or "Hemopurifier".
- Here's a link to what Time Magazine had to say in 2014 about Aethlon and the Hemopurifier. It helped cure someone with Ebola virus. http://tinyurl.com/y4hdz4m3
- And here is a white paper that has interesting sections on how the Hemopurifier removes exosomes from the blood. Focused on cancer exosomes, but if you dig around their site, you'll see they also address exosomes that may be relevant to inflammatory conditions, Parkinsons, etc. http://tinyurl.com/yd33efjo
 
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The exosome adsorber called "Hemopurifier" looks especially especially interesting. Especially as it's fairly non- or low-invasive. Either one of these technologies, of course would not cure ME/CFS, but could put it into temporary remission. (Maybe it could if it allowed the body to "reset" itself and temperorarily get out of any metabolic trap like Nancy Klimas and Ron Davis think is possible. Or allow the body's immune system to work correctly for a short while, killing any infectious trigger.) It could be a very powerful test case study showing ME/CFS is curable to raise new funding and recruit new researchers from outside ME/CFS.
 
kilfinnan said:
It's only my own experience. Before diagnosis, in fact a year before ME was on my radar I had a triple bypass. Obviously I didn't feel great before the op but after the op I felt great. Lots of energy, really happy. After 2 months I gradually had less and less energy until, finally going to the GP and being diagnosed.

It's my feeling that the transfusion sorted me out. I can't obviously prove it but that is my strong impression. Of course the OT said that the ME was a reaction to my op! She forgets about the 2-3 month period when I felt great, full of energy and smacking a golf ball 6 weeks after the op.

If I could I'd have a transfusion tomorrow.
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Heparin injections used to thin the blood when flying ( I have factor V Leiden, a blood clotting disorder) temporarily improve my energy levels, blood again. There is a drug called rivaroxaban that can have the same effect but I cannot get it prescribed for ME. There seems to be so much connected to the blood that affects this disease.
 
obeat said:
Scheibenbogen in Germany has done a small study using immunoabsorption in ME and initial results were encouraging. Anyone know if there's a follow-up? @Joh
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it had really good results, with the impact quite immediate. and longer lasting, from weeks to a year or so.
people were fit.
there must be a further research on the reasons for this ? i asked already at the german forum at the other site.
@malea @Inara @Lisa108 @Joh @wonkmonk ... ?

- nothing wrong with bcells (rituximab)
- nothing wrong with mitochondria
- something in the blood (increases signal)
- can be filtered out (temporarily)
- can be resetted with HC blood (temporarily)

would just be so interesting to know what it is and where it comes from.
also interesting, that HC blood returns to normal some time after "infection" (or did i misunderstand this?)
or to test if alz, PD, fibro blood als recovers / how long this takes... ?
 
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