Breaking News: ME is in the blood

[Sing]

@alicec and others, do you know of any other illnesses which are known to be the result of a serum abnormality?

 

[Strawberry]

I mentioned this to my daughter the other day, and she thinks something is MISSING from the serum. What do people in the know think? (btw my daughter was majoring in microbiology before switching to geology... she has studied some, but if she is wrong no need to throw her under the bus)

Then on the other hand, since my issues started after a transfusion, I lean to something that is IN the serum. Which makes more sense?

 

[alicec]

@alicec and others, do you know of any other illnesses which are known to be the result of a serum abnormality?

I'm not sure if I understand your question.

The tweets were indicating that some substance(s) in the serum of ME/CFS patients was affecting the function of cells. It could be an autoantibody, some kind of immune regulator (cytokine) or any number of other things. Or, as has been suggested, maybe something is missing.

One would need to know a lot more about the detail to speculate further.

The serum is not the cause of the problem, it is just the carrier of the unknown factor(s).

 

[acer2000]

Transfusions usually are just red blood cells. How pure they are idk. But that's the intention. Does anyone know?

 

[CFS_for_19_years]

Transfusions usually are just red blood cells. How pure they are idk. But that's the intention. Does anyone know?

Transfusions can either be packed red cells or whole blood. Even the packed red cells will have some plasma from the donor mixed in, otherwise they would be pure sludge and wouldn't drip out of the bag.

 

[acer2000]

Well I hate to use an old computer term but why don't they just "diff" the me/CFS blood against a healthy control. Certainly that would be a good start. I think we have the technology now to do this, right? Then you'd know what proteins, toxins, pathogens, etc are different between the two samples.

(For those who aren't old school unix graybeards diff means take two files and go line by line and make a list of the differences)

 

[alicec]

Well I hate to use an old computer term but why don't they just "diff" the me/CFS blood against a healthy control.

If it were that simple, someone would have done it by now.

I think we have the technology now to do this, right?

Which technology did you have in mind? There are so many different categories of substances in serum that no single technology could possibly analyse the complexity.

Here is a description of Ian Lipkin's Proposed Study which is attempting to do what you suggest. It is not something that can be accomplished easily and they are still trying to get the funds to enable them to do the various analyses that they propose.

Large Microbial Discovery and Immunity study in ME/CFS
National Institutes of Health/NINDS/Microbe Discovery Project (in progress) 125 cases, 125 matched controls: sample collection in blood at 2 time points, stool and saliva at 4 time points over a year. Microbiome (bacteriome, mycobiome, virome), proteomics, metabolomics, immunology, genetics and epigenetics. Foundation for the establishment of a Center of Excellence. Collection has been funded through NINDS and donations, as well as heavily subsidized by CII. Read more about this massive study that needs our community’s support here.

 

[alex3619]

Transfusions can either be packed red cells or whole blood.

Transfusions are also chemically modified. They add citric acid as an anticoagulant, or at least they used to when I last investigated this.

 

[CFS_for_19_years]

Transfusions are also chemically modified. They add citric acid as an anticoagulant, or at least they used to when I last investigated this.

Citric acid and sodium citrate are the anticoagulants used in preparing blood products. They are two of the components of CPD.

CPD (citrate phosphate dextrose) is a solution containing citric acid, sodium citrate, monobasic sodium phosphate, and dextrose that is the primary anticoagulant used for preservation of whole blood or red blood cells for up to 21 days. The official USP name is anticoagulant citrate phosphate dextrose adenine solution.

 

[unto]

in my experience (31 years) with ME, various people (family members, relatives, friends) have contracted the disease through normal social relationships with my person, and no passage of blood .....; what they found in the blood ke inhibits the action of NK cells or is a product of the metabolism of a pathogen or pathogen itself, ke is probably present in the saliva

 

[Daffodil]

in my experience (31 years) with ME, various people (family members, relatives, friends) have contracted the disease through normal social relationships with my person, and no passage of blood .....; what they found in the blood ke inhibits the action of NK cells or is a product of the metabolism of a pathogen or pathogen itself, ke is probably present in the saliva

hi unto. you really passed the disease to your relatives? did you kiss, share food, etc? they legitimately have CFS?

are you saying its contagious constantly, even years after you first got it?

 

[Daffodil]

they said that healthy cells put into CFS blood will become unhealthy...but wouldn't this happen with any autoimmune disease?

 

[Seven7]

I think the best advocay for ME will be to record the blood of healthy patient pooping out on the ME blood. So a short video and Pictures for an article that we can use moving forward. Poeple are physical prove and queues, So if this people can record and send us that will be the best that ever happened to us.

 

[unto]

hi Daffodil,I'm sorry if I said late ... but I always have a lot to do; I read your post on the mobile phone but I can not translate what I write .....They, my family members have contracted the ME, probably from the traces of my saliva that I unknowingly left on chairs, tables, cutlery, glasses door handles and so on. etc., as well as some other relatives and friends who attended our home ..... or we frequented their home .....yes, there are people who I started attending 20-25 years after the onset of the disease on my body, which in the past did not know and who lived far from where I live .....some people have never come into my house, I attended only out.I wonder if I am sure that these people (family members, relatives, friends) have really ME contract? and that the infection occurred via my person?yes I am sure.......after 31 years of ME I became acute clinical ....... you can not go wrong when you see that the people around you have frequent sore throat, they begin to suffer from headaches, easily fall ill with flu and colds ... .that go on for weeks .... and when they are not sick are afraid to get close to who is affected ...., often have tears in his eyes, digest bad ..... complain of neck pain, suffering from cervical , are often sleepy and tired, avoid sports and social life have .....

 

[unto]

they changed the facial expression .... are sadder, are insistently by the doctor ... etc. etc

 

[JES]

hi Daffodil,I'm sorry if I said late ... but I always have a lot to do; I read your post on the mobile phone but I can not translate what I write .....They, my family members have contracted the ME, probably from the traces of my saliva that I unknowingly left on chairs, tables, cutlery, glasses door handles and so on. etc., as well as some other relatives and friends who attended our home ..... or we frequented their home .....yes, there are people who I started attending 20-25 years after the onset of the disease on my body, which in the past did not know and who lived far from where I live .....some people have never come into my house, I attended only out.I wonder if I am sure that these people (family members, relatives, friends) have really ME contract? and that the infection occurred via my person?yes I am sure.......after 31 years of ME I became acute clinical ....... you can not go wrong when you see that the people around you have frequent sore throat, they begin to suffer from headaches, easily fall ill with flu and colds ... .that go on for weeks .... and when they are not sick are afraid to get close to who is affected ...., often have tears in his eyes, digest bad ..... complain of neck pain, suffering from cervical , are often sleepy and tired, avoid sports and social life have .....

Having a sore throat alone has nothing to do with ME. I see people everyday at my workplace that are sick every winter for several weeks and have various flu-like symptoms. I'm amazed at how much people are sick these days and how their immune systems eventually manage to beat the virus after enough resting.

It's not uncommon that I see people who feel fluish for 2 months, but none of these cases have gone on to develop something like ME, they all get better eventually. They might well carry the same virus that can trigger ME in some persons, but 99% of these people don't develop permanent ME. ME is likely autoimmune and has several unique characteristics like severe PEM (post-exertional malaise) that are distinct from normal flu-like symptoms. With the current information available, we shouldn't use expressions like "contracted ME".

 

[taniaaust1]

hi Daffodil,I'm sorry if I said late ... but I always have a lot to do; I read your post on the mobile phone but I can not translate what I write .....They, my family members have contracted the ME, probably from the traces of my saliva that I unknowingly left on chairs, tables, cutlery, glasses door handles and so on. etc., as well as some other relatives and friends who attended our home ..... or we frequented their home.

How do you know without specific incidences that they contracted ME/CFS from you? and rather just not getting sick from other things which could be in that environment eg maybe you have bad mold in your home or area

My sister used a glass I'd just used (I freaked out at the time about it.. she didnt believe this illness was transmittable so laughed about my worry but then developed ME/CFS. something she has to this day).. my ex.. it was transmitted by kissing and it wasnt transmitted by the environment.

Kissing him on 3 occassions, next day he was sick with flu like symptoms...same as what I get.. thing is this only lasted 5-7 days.. same amount of time my early bouts used to last (he obviously wasnt genetically susceptable and was able to heal each time from whatever he got from me).

We ended up having to have a non kissing relationship and he didnt then get sick from me again once we cut out kissing and no saliva contact. So I know it took direct saliva contact for transmission. No one has ever got sick from me who hasnt had that saliva contact.

Whatever this is isnt highly contagious....not like a normal cold/flu where its just in the air from others but seems to be more contagious then something like AIDS. I'd take care not to sneeze onto someone if I had a symptom flare so they woudnt risk being contaminated by droplets.

 

[unto]

Traduci da: Inglese
hi Jes, your Objections are reasonable, but they could be the same ones That Make us some psychiatrists / Psychologists to argue That it's all in our heads ....
I think that we can have ME without (or with little) PEM, the differences between the sick can be many, both in the number of symptoms and severity of them;
I am convinced that the vast majority of the patients have moderate symptoms and apparently does a "normal" life

I still was not talking about occasional sore throat, I was referring to a series of repeated symptoms in the years that give me the conviction does not make mistakes, because even saw again my sufferings in all of them ...
in 20 years I know and I have taken consciousness of ME I heard various theories on the origin of the disease, the genetic theory that environmental chemical to the psychological realm, all wrong ..... I consider even that wrong autoimmune.
ME historically appeared in the form of local epidemics, often register more cases in the same environment (family, friends, work) then all my personal experience convinced me of contagiousness.
I took a decade, including fears, hopes, anxieties and feelings of guilt ......

 

[Sea]

Transfusions can either be packed red cells or whole blood. Even the packed red cells will have some plasma from the donor mixed in, otherwise they would be pure sludge and wouldn't drip out of the bag.

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

 

[alex3619]

they said that healthy cells put into CFS blood will become unhealthy...but wouldn't this happen with any autoimmune disease?

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