Breaking News: ME is in the blood

[medfeb]

Only if those cells express the target. An autoinflammatory disease seems more likely for this kind of effect.

What if the autoimmunity affects the mitochondria/energy producing pathways in all cells?

 

[Jenny TipsforME]

I think this rules out the argument that a metabolic process within the cells is broken though and the cells are shutting down to prevent damage

This isn't my reading of it, especially as the researchers for both ideas overlap.

Does this mean that we contaminated the blood and damaged cells of the one who got it while they were trying to heal?

You donated blood in good faith, attemptingto do good.

My feeling is that the problem won't be infectious in that way, in that a particular blood component (e.g. plasma) might introduce a CFS-like blood borne stress on the recipient, but it would be transient, or immediately diluted away

But isn't there a study showing 5% of ME started just after a blood transfusion? Can anyone remember the reference? Is this coincidence?( genetic susceptibility likely required too and maybe they'd have got it anyway post virally or something).

 

[lansbergen]

But isn't there a study showing 5% of ME started just after a blood transfusion? Can anyone remember the reference? Is this coincidence?( genetic susceptibility likely required too and maybe they'd have got it anyway post virally or something).

I think that was KDM

 

[CFS_for_19_years]

I think they can also be plasma only. From memory that's what one of mine was when I queried the colour

Yes, I forgot that plasma transfusions are also needed for some indications.

 

[taniaaust1]

I think that was KDM

I thought it had also been mentioned somewhere in some study, I may be wrong.

We so need a website which just contains all our studies filed and connections to various areas and also things which may be unpublished but which our top ME specialists have found. There is now days so much research out there that its hard to keep track of it all. Maybe one day the ME/CFS community can think about setting such a website up, it would be invaluable (I'd help)

 

[Snowdrop]

I thought it had also been mentioned somewhere in some study, I may be wrong.

We so need a website which just contains all our studies filed and connections to various areas and also things which may be unpublished but which our top ME specialists have found. There is now days so much research out there that its hard to keep track of it all. Maybe one day the ME/CFS community can think about setting such a website up, it would be invaluable (I'd help)

There is MEpedia which I think fulfills at least in part that function.

 

[taniaaust1]

There is MEpedia which I think fulfills at least in part that function.

that's far too confusing and one cant find a list of all the studies in each area of things eg I just did a search for mitochrondrial studies there and there isnt even such a page. I think there needs to be a site with ALL our research on it where anything new which comes out is put directly onto it under the subject of the study. Something which anyone including our drs can use to easily find ME/CFS studies in certain areas.. just factual info on the site eg actual studies or actual quotes or findings from ME specialists on things.

(I was put off of MEpedia many years ago as much of it isnt based on fact but has just options written in and I was reading much which was actually wrong there).

 

[Snowdrop]

MEpedia is a website being developed by MEAction. It's new and still in development not all the pages are complete and it is a work in progress. It presently lacks enough people to fill it up. I think there is a thread here somewhere on it.
Some people disagree with having all things about ME represented it's true. I believe there is a page for CBT etc. There is some opinion that it should just deal with positive aspects for people to find info on. But I think it is reasonably factual at present.

Although this still may not be quite what you had in mind, it is suppossed to be a repository of ME related info.
See: http://me-pedia.org/wiki/Welcome_to_MEpedia

 

[Hell...Hath...No...Fury..]

When i was in hospital from a ruptured cancer op. I had 9 pints pumped into me using both arms to keep up with my blood loss.

After i'd been stitched up again etc. I felt fantastic considering the ordeal I'd been through.

We at the time thought it was down to the saline drip boosting me, i'm now wondering if it was the new body of blood I received instead.

I was clear headed, relaxed and felt great for a few days, possibly the best i've felt during this illness.

 

[JohnCB]

When i was in hospital from a ruptured cancer op. I had 9 pints pumped into me using both arms to keep up with my blood loss.

After i'd been stitched up again etc. I felt fantastic considering the ordeal I'd been through.

We at the time thought it was down to the saline drip boosting me, i'm now wondering if it was the new body of blood I received instead.

I was clear headed, relaxed and felt great for a few days, possibly the best i've felt during this illness.

Although on a different scale of surgery, I had a sinus operation nearly 20 years ago. The ME was well established but not as bad as it is now. I also had a period of a few days, maybe a week when I felt significantly better, perhaps similar to your experience.

Now I don't think I was given any blood for this, so that wouldn't be the cause in my case. I was wondering if there was an effect of the general anaesthetic perhaps. Perhaps my body enjoyed a good rest while I was unconscious? Has this kind of thing, an improvement after surgery, anaesthetic or blood transfusion been seen by others?

 

[Hell...Hath...No...Fury..]

@JohnCB Its definitely interesting. For me personally it definitely wasn't the anasthetic as i'd had the original operation just a few weeks prior to the rupture repair and it was only on the second visit that i felt great afterwards, the only thing different between both ops was the blood on the second admission. I never thought about that detail until this thread popped up.

 

[taniaaust1]

MEpedia is a website being developed by MEAction. It's new and still in development not all the pages are complete and it is a work in progress. It presently lacks enough people to fill it up. I think there is a thread here somewhere on it.
Some people disagree with having all things about ME represented it's true. I believe there is a page for CBT etc. There is some opinion that it should just deal with positive aspects for people to find info on. But I think it is reasonably factual at present.

Although this still may not be quite what you had in mind, it is suppossed to be a repository of ME related info.
See: http://me-pedia.org/wiki/Welcome_to_MEpedia

thanks. You saying its new makes me wonder if Ive confused it with another very similar website I read some in the past (it was a wiki kind of ME/CFS site). Has this MEpedia been around for over 2 years? oh sorry Im going off too off topic.. can someone send me a mail to let me know how long MEpedia has been around for?

(im trying to clear up if Im confused or not)

 

[Jenny TipsforME]

@taniaaust1 I can't tell you precisely but it's a matter of months not years.

 

[perrier]

When i was in hospital from a ruptured cancer op. I had 9 pints pumped into me using both arms to keep up with my blood loss.

After i'd been stitched up again etc. I felt fantastic considering the ordeal I'd been through.

We at the time thought it was down to the saline drip boosting me, i'm now wondering if it was the new body of blood I received instead.

I was clear headed, relaxed and felt great for a few days, possibly the best i've felt during this illness.

 

[Hell...Hath...No...Fury..]

@perrier sorry to hear about what your daughters been through. Thats so interesting. I was also good for a couple of weeks, i remember this because i wasn't supposed to do anything and was supposed to rest; but i was up and about constantly and i remember my mam and partner kept having a go at me because I just wouldn't sit down and was on the move constantly.
I think i was incapable of resting because apart from the stitches I felt fine!
I don't remember having an instant crash, i think i just gradually declined over a few days until i was back to being me again.

 

[TreePerson]

The blood transfusion reactions are interesting. Does anyone know how long it takes to make autoantibodies and for them to build up? I have gathered from the rituximab trials that they
take several months to die down.

 

[Seven7]

I think the best help for ME is to record this reaction on the microscope and make a small to the point video that ME is in the blood. So we can have something against the doubters of the way we think issue.

 

[knackers323]

Two years later, has there been any progress in working out what this thing in the blood is?