Free Mikovits web talk from Cheney Clinic/Wednesday Feb. 10th! 1:00 EST

[Countrygirl]

I'm interested in this possible link with a blood transfusion cos I had one in 1979 and I live in the UK. Within 10 weeks I had 2 weeks of severe mumps even though I had this badly as a child and I know one isn't supposed to have mumps twice. This all happened within 10 weeks of the birth of my 3rd baby and I was so ill. I was never quite normal after that and started suffering with anxiety attacks for no reason and then 4 years later I had 2 weeks of flu from which I never recovered. AFter that the almost daily migraines and vertigo attacks started but my immune system was rubbish and I picked up every virus or infection there was. Also my HPA axis was severely impaired and I cannot live without daily steroids and thyroid medication but I have never been able to regulate this in a normal way.

I hope to get tested once the antibody test comes out. I am very tempted to get the test done through Biolab as soon as possible but think it would be sensible to wait a few more months for the new test.

Pam

Pam's message has jogged a memory, which might also throw a little light on the mystery of a connection between cluster outbreaks and a retrovirus. I believe that I read a few weeks ago that there were ?8 people in Belgium who developed ME within just days of receiving a blood transfusion. If this is true, and,of course, it is a big if - it suggests that the incubation period might be quite short.

I have also recently been told by a friend that her niece has recently developed ME shortly after receiving a blood transfusion in the UK. It may not be cause and effect........but it is interesting......

BW

C.G.

 

[julius]

countrygirl,

Could you find out more info on those cases, especially the young girl. If you could trace XMRV from the donor to the recipient, it could be a smoking gun!!

 

[Chris]

transfused CFS

Hi--blood transfusions are my best bet about how I got CFS--had heart surgery Sept 2004, no details but in the light of what happened during the surgery I must have had multiple transfusions--developed first signs Dec 2005, mostly recovered, then got hit again Dec 2006, some recovery, then again end of Jan 2007, only a couple of very partial remissions since then. No chance of tracing donors, but looks as if this may well have been the pathway. Was in great shape until these things started up, despite my then 71 years. Chris

 

[FernRhizome]

I live in a rural New England state and I just heard that the local hospital held "in service" days and one of the meetings all the nurses had to go to had to do with blood transfusions. Apparently there was a lot of discussion on avoiding any unnecessary infusions due to various "viruses" in the blood donor supply. I was so fascinated to hear this! And wonder if it's coming from the Red Cross and if it's specific to XMRV research results that we haven't heard yet.....clearly somewhere up the line someone is getting nervous about the number of transfusions and some kind of contagion risk. ~Fern

 

[Kati]

I live in a rural New England state and I just heard that the local hospital held "in service" days and one of the meetings all the nurses had to go to had to do with blood transfusions. Apparently there was a lot of discussion on avoiding any unnecessary infusions due to various "viruses" in the blood donor supply. I was so fascinated to hear this! And wonder if it's coming from the Red Cross and if it's specific to XMRV research results that we haven't heard yet.....clearly somewhere up the line someone is getting nervous about the number of transfusions and some kind of contagion risk. ~Fern

Fern, it can only be good news!!! Maybe we will have a formal press release in the near future.

 

[rebecca1995]

Live feed quality

I felt bad that Dr. Mikovits didn't get a better webcast.

Personally, I think Wanda Jones should be in charge of all webcast events. The quality of the CFSAC feed totally ROCKED--and it was closed-captioned, too! None of the other events have approached its clarity, even the CAA's webinar. (Anne, put down that fork! :Retro wink

Wanda, we love you!

 

[Cort]

Wanda had three camera men positioned in different parts of the room with VERY professional looking equipment, banks of lights set up..... yes that was the cream of the crop!

 

[Rrrr]

i could not make the live webcast. and i can't find an archived one. any hints?

rrrr

 

[FernRhizome]

Will anyone transcribe this talk or do you think the prohealth talk transcription covers everything? It was AMAZING how you so many of you transcribed that prohealth talk!!! I just went to try and print out the prohealth talk and could only find some of the transcriptions listed. For instance for some reason parts IV and V were not listed on the XMRV page. Does anyone know why some of the transcribed parts are not listed? ~Fern

 

[Countrygirl]

=julius;44962]countrygirl,

Could you find out more info on those cases, especially the young girl. If you could trace XMRV from the donor to the recipient, it could be a smoking gun!!

Hello Julius,

I've rummaged through the Internet, and although I cannot find the article I read previously, I have unearthed the following. It is from a paper/article entitled ' Blood transfusions and CFS' by K. de Meirleir, P De Beeker and I Campine - Human Physiology and Medicine - Brussels CPAR Digest Vol 1 # 401. I found the information on the Massachusett's CFIDS site.

It reports on 752 patients who fulfilled the 1994 CDC criteria, 34 (4.5%) of which developed CFS a few days to a week after a blood transfusion. A further 8 developed it at least two months after a transfusion. The paper's conclusion is that blood transfusion should only be given when strictly necessary and not as a standard procedure, like after child birth.

In a speech by de Meirleir in the Sydney conference, De Meirleir is quoted as saying '....blood products can transmit (CFS), we are sure of that. We have a rather large number of CFS patients who became ill immediately after transfusion'.

I will ask my friend if she has further information about her niece, although there will be no chance of finding the donor.

Sadly, I can only dip in and out of the forums at the moment as I'm in a crash caused by family illness and death, which made it impossible to pace. I'm trying to at least keep up with most of the posts, but am too blated to respond at the moment.

to everyone

C.G.

 

[FernRhizome]

Wow. That's amazing how quickly the CFS hit transfusion patients. I wonder if that's because anyone getting a transfusion is already majorly compromised by illness or injury (or they wouldn't be getting a transfusion to begin with). Thus their immune system is probably already overtaxed and they'd be very susceptible, as opposed to a healthy person who might get hit by EBV or some other virus or more long drawn out stress conditions of one kind of another. So it would make sense the direct transfusion into an already compromised patient would be the fastest "take over" for a retrovirus. Does that make sense? ~Fern

 

[gracenote]

Hello Julius,

I've rummaged through the Internet, and although I cannot find the article I read previously, I have unearthed the following. It is from a paper/article entitled ' Blood transfusions and CFS' by K. de Meirleir, P De Beeker and I Campine - Human Physiology and Medicine - Brussels CPAR Digest Vol 1 # 401.

Here is a link to that article. I don't think we'll have the smoking gun until we know that the blood was donated by a CFS patient and then caused CFS.

Blood Transfusions and CFS

 

[garcia]

Am I correct in thinking there are at least 3 sources showing XMRV in UK?
1. Dr Mikovits said that when their original samples were unblinded in Dec., it turned out that there were samples from UK, Ireland, Germany, Australia and many US States. (Not sure if any from UK were positive.)
2. There was the group of 50 from UK whose tests were paid for by a benefactor in UK who has ME; approx. half were positive.
3. This newly mentioned group of 20, with 8 being positive?

Oerganix you are right about 1 & 3.

Number 2 I have never heard of. Can you give further details on that one?

 

[garcia]

Oh, I've just re-read this and it sounds awful - I didn't mean to sound as though I was dismissing people for "just" wanting to get an XMRV test and expecting them to leap into a big PR exercise having got what might be very upsetting results. I just read the word "advocacy" and jumped to the conclusion that part of the group's intention would have been to advocate having got results, as opposed to the group coming together originally for advocay reasons. I'm very sorry! I didn't mean to sound rude or critical.

Thanks for posting that Sasha. Yes we are not an advocacy group per se, but rather a group of patients who got together under the kind auspices of another patient (who organized all the testing for us).

Although lets be honest, any group of CFS patients is by definition an advocacy group since no one else is going to advocate for us.

 

[julius]

Here is a link to that article. I don't think we'll have the smoking gun until we know that the blood was donated by a CFS patient and then caused CFS.

Blood Transfusions and CFS

For the smoking gun we'd need the following as far as I can tell,

1) confirmation that XMRV causes CFS (crosses fingers)
2) proof of transmission of XMRV from X+ donor to previously X- recipient

I haven't read the deMerlier article yet, but I am wondering if they have all the history and blood to go back and test those subjects for XMRV.

 

[Kati]

For the smoking gun we'd need the following as far as I can tell,

1) confirmation that XMRV causes CFS (crosses fingers)
2) proof of transmission of XMRV from X+ donor to previously X- recipient

I haven't read the deMerlier article yet, but I am wondering if they have all the history and blood to go back and test those subjects for XMRV.

julius, dr Peterson mentioned at CFSAC comittee that he had a patient that got CFS from blood transfusion, is XMRV + and they have his blood sample pre transfusion and traced the donor...

 

[julius]

julius, dr Peterson mentioned at CFSAC comittee that he had a patient that got CFS from blood transfusion, is XMRV + and they have his blood sample pre transfusion and traced the donor...

I thought I heard that too. But I can't figure out why Judy is still saying we need to find this link? Any thoughts?

I just re-read my earlier post in your quote and I realized kind of wrote it wrong. Guess I'm pretty foggy today. But I think you get my point. We need XMRV transmission, not CFS to CFS.

 

[Rrrr]

i still can't find the archived video of this judy mikovits talk at the cheney clinic. are others able to access it on the cheney site, and it is just me who can not?

warmly
rrrr

 

[Hope123]

Hello Julius,


I will ask my friend if she has further information about her niece, although there will be no chance of finding the donor.

In the US, units of blood are coded and if you recieve a transfusion, somewhere in your medical records, there is some sort of sticker or notation what that code is. If you can get your medical records, you can find the code, possibly find which blood bank the blood comes from, and potentially the donor. Now the blood bank may not give you the name of the donor but they might be able to track it themselves. I'm sure there is some procedure or red tape along this trail that I don't know about yet though. And I don't have any idea how blood banks work in the UK.

 

[Countrygirl]

=Hope123;46421]In the US, units of blood are coded and if you recieve a transfusion, somewhere in your medical records, there is some sort of sticker or notation what that code is. If you can get your medical records, you can find the code, possibly find which blood bank the blood comes from, and potentially the donor. Now the blood bank may not give you the name of the donor but they might be able to track it themselves. I'm sure there is some procedure or red tape along this trail that I don't know about yet though. And I don't have any idea how blood banks work in the UK.

Thanks for this Hope123. I will ask my friend if she can supply me with more info.