"sticky blood" and pots, ME/cfs. Do we have instead Hughes syndrome which is treatable?

Binkie4

Binkie4

Senior Member (Voting Rights)
https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

I posted about 2 months ago that heparin ( which I take when flying) seemed to improve my ME. I have sticky blood from factor V Leiden. Cort has posted today on this subject. Dr Davis is turning up links with sticky blood.

Does anyone @Jonathan Edwards know which medical specialty would deal with Hughes syndrome? I tried to talk to a haematologist about the haemorrhological properties of blood but unsuccessfully.
 
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Binkie4 said:
https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

I posted about 2 months ago that heparin ( which I take when flying) seemed to improve my ME. I have sticky blood from factor V Leiden. Cort has posted today on this subject. Dr Davis is turning up links with sticky blood.

Does anyone @Jonathan Edwards know which medical specialty would deal with Hughes syndrome? I tried to talk to a haematologist about the haemorrhological properties of blood but unsuccessfully.
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Nobody much calls it Hughes syndrome except Dr Hughes, who did not discover it and has contributed rather little to sorting it out. It is anti-phospholipid syndrome. It has nothing to do with factor V Leiden.

I would be sceptical about the report from the Dysautonomia Conference. This sounds as if it is attended by the sort of physician who collects disease associations without doing proper epidemiology. You just end up with a complete muddle of spurious connections.

There is a connection between anti-phospholipid antibodies and ME/CFS. Venables found raised levels of anti-phospholipid antibodies in ME about thirty years ago. Whether or not it means anything is still unclear. Maybe there is a different lot of anti-phospholipid antibodies that produce fatigue rather than thrombosis. If it was the same pro-thrombotic antibodies I think we would all know by now that people with ME have strokes, venous thromboses and miscarriages.

Anti-phospholipid syndrome is mostly dealt with either by rheumatologists or haemotologists, probably most often the former.
 
Inara said:
@Binkie4, is sticky blood the same as sticky platelet syndrome?
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I'm sorry @Inara, I don't know.
I have been following with some curiosity any comments about " sticky blood" and was interested to see Cort's posting today. I shall have a think about whether it's appropriate to seek more advice. I do have an appointment with Dr Bansal who might advise whether to follow this up.
 
Thank you @Jonathan Edwards. I shall have a think about whether to ask for a referral to a rheumatologist after doing some more reading.

I can't help but be curious about blood viscosity and ME. Poor blood flow would explain so many of my symptoms. Once again we just don't know enough although Dr Davis does seem to be working on this. Thanks for your comments.
 
Binkie, I think Yvette Cooper MP said she has Hughes Syndrome a few years ago and I can't remember if that a different diagnosis or if she thought was related to her CFS.

There's been quite a lot of discussion on blood and CFS for many years but it tends to go in and out of fashion. There used to be a group called CFS FM Experimental where it was covered.

Here's a link with a lot of information that one patient from there put together of his own experience. Don't know how much of it is still relevant or have things moved on since then?

https://cfsremission.com/treatment/thick-blood-clots-dimension-of-cfs-etc/
 
@ukxmrv
Thank you for the comment and the link. Very interesting.
As far as I know the work on blood done in the 1990s by dr Leslie Simpson wasn't pursued, but recently Dr Davis has been working with someone from San Jose University on the sticky blood issue. Waiting with interest to see what emerges.
Had never heard of Yvette Cooper and Hughes syndrome, only her ME/cfs. Will have to dig around.
 
Binkie4 said:
As far as I know the work on blood done in the 1990s by dr Leslie Simpson wasn't pursued, but recently Dr Davis has been working with someone from San Jose University on the sticky blood issue. Waiting with interest to see what emerges.
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There is an update on this. To save myself time writing it out, here's what I've drafted on it for my weekly news:

OMF ''Meet Mohsen Nemat-Gorgani, PhD, member of the SGTC Team''
Describes his research and reports findings of differences in deformability of red blood cells between ME patients and healthy controls that may lead to a biomarker. Paper has been submitted for publication.
Article here Thread here post #35

Edit to add: I've just found the thread you opened on this last night, @Binkie4.
OMF update - Research on red blood cell deformability
 
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Just to clarify, the work on red blood cell deformability I linked to in the above post is completely different from 'sticky blood' discussed earlier in this thread which involves the blood clotting cells called platelets, not red blood cells, as I understand it. From my old friend the internet:
Sticky blood syndrome, or antiphospholipid syndrome:
The immune system produces abnormal blood proteins called antiphospholipid antibodies, which cause blood platelets to clump together. Hughes syndrome is sometimes called 'sticky blood syndrome' because people with this condition are more likely to form clots in blood vessels (thromboses).
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Yes, I met Dr Simpson when he visited a London ME support group in the 90's. His work was on the shape of the red blood cell.He visited a number of UK group and gave us a blood testing kit which some of us were able to get a sample into and send back off to him in New Zealand.

This report seems to sum up what he thinking was when he spoke to the London group back then (from my rubbish memory though)

http://www.cfidsreport.com/Articles/researchers/lessimpson.htm

He passed away in 2015

Moderator note: This post has been copied across to this thread:
OMF update - Research on red blood cell deformability.
It is suggested further discussion on red cell deformability continue over there to reduce confusion between the two blood conditions being discussed.
 
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Inara said:
@Binkie4, is sticky blood the same as sticky platelet syndrome?
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Does anybody know this?

When I search for "sticky blood" I find antiphospholipid syndrome, "sticky platelet syndrome" seems to be connected to a higher risk of thrombosis (which also holds for antiphospholipid syndrome?). But they seem to be linked somehow: http://www.bloodjournal.org/content/106/11/4138?sso-checked=true

Maybe "sticky platelet syndrome" is the umbrella term?

Jonathan Edwards said:
There is a connection between anti-phospholipid antibodies and ME/CFS.
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I never heard this before - very interesting. Thank you. Do you maybe have the publication at hand?

Would it be worth being checked for anti-phospholipid antibodies? Is there some kind of treatment that could help with it?
 
Inara said:
Maybe "sticky platelet syndrome" is the umbrella term?

I never heard this before - very interesting. Thank you. Do you maybe have the publication at hand?

Would it be worth being checked for anti-phospholipid antibodies? Is there some kind of treatment that could help with it?
Click to expand...

Sticky blood is a general lay term for easy thrombosis or clotting. That can either be due to easy formation of fibrin blood clot, as with factor V Leiden, or easy aggregation of platelets - which is the case for anti-phospholipid syndrome and various platelet disorders.

I cannot find the Venables study on PubMed but Patrick Venables mentioned it again to me not long ago. The study was probably done in the 1980s or 1990s. There is treatment for anti-phospholipid syndrome if there is evidence of thrombosis but treatment is not indicated if there is just antibodies and no thrombosis.
 
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