Antibody to parvovirus B19 protein associated with chronic arthralgia in ME/CFS
- Thread starter leelaplay
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Thanks islandfinn!
Thanks so much for posting this islandfinn.
And I'm thrilled to see that Dr Kerr is expanding his circle of collaborators on Parvovirus B19 and ME/CFS. This is great!
FYI after my very distinct and brutal flu-like illness after an outbreak of "Slapped Cheek/Fifth Disease/Parvovirus B19" at our children's preschool, I then had 3 years of seasonally-related acute polyarthralgia. In other words for 3 years, late winter/early spring I'd have SUDDEN onset of extremely painful, swollen joints - mainly the distal ones: hands/wrists/elbows; feet/knees. And then as suddenly as it came on, it would be gone in a couple of weeks. True to form, by the time I got an appointment with a rheumatologist, my symptoms had subsided. Even worse, she had never heard of PVB19 arthritis - nor the risk of progressing to ME/CFS. When the arthritis ended in year 3 or so, I stupidly thought, "well, that was weird - glad that's over". Little did I know that the insidious fatigue, post-exertional malaise, concentration problems, chronic infections etc... were just another manifestation of a persistent PVB19 infection - until it affected my brain (stroke symptoms) and heart (angina).
It was actually Kerr's work on PVB19 and immunoglobulins - cited in Dr Montoya's Valganciclovir clinical trial data - that finally twigged me to the fact that all these weird, disparate symptoms were ONE. To get a good picture of how PVB19 can progress to ME/CFS, take a look at the patient descriptions, and Table 1 in Kerr's article on PVB19, ME/CFS, and IV immunoglobulins:
http://www.journals.uchicago.edu/doi/pdf/10.1086/374666?cookieSet=1
Back to the December Kerr article - my only concern is that he relied on bloodwork again, when there is quite a bit of research that one needs to also look at tissue biopsy. I suspect this might explain why
This is a thorn in the side of adequate diagnostics of persistent PVB19 - I believe it is grossly underdiagnosed because of our dependance on bloodwork. I posted a whack more on this at: http://www.forums.aboutmecfs.org/showthread.php?p=21352#post21352
That said, Kerr has possibly done more for ME/CFS patients with PVB19 than any other researcher. Here's hoping for LOTS more!
Thanks so much for posting this islandfinn.
And I'm thrilled to see that Dr Kerr is expanding his circle of collaborators on Parvovirus B19 and ME/CFS. This is great! FYI after my very distinct and brutal flu-like illness after an outbreak of "Slapped Cheek/Fifth Disease/Parvovirus B19" at our children's preschool, I then had 3 years of seasonally-related acute polyarthralgia. In other words for 3 years, late winter/early spring I'd have SUDDEN onset of extremely painful, swollen joints - mainly the distal ones: hands/wrists/elbows; feet/knees. And then as suddenly as it came on, it would be gone in a couple of weeks. True to form, by the time I got an appointment with a rheumatologist, my symptoms had subsided. Even worse, she had never heard of PVB19 arthritis - nor the risk of progressing to ME/CFS. When the arthritis ended in year 3 or so, I stupidly thought, "well, that was weird - glad that's over". Little did I know that the insidious fatigue, post-exertional malaise, concentration problems, chronic infections etc... were just another manifestation of a persistent PVB19 infection - until it affected my brain (stroke symptoms) and heart (angina).
It was actually Kerr's work on PVB19 and immunoglobulins - cited in Dr Montoya's Valganciclovir clinical trial data - that finally twigged me to the fact that all these weird, disparate symptoms were ONE. To get a good picture of how PVB19 can progress to ME/CFS, take a look at the patient descriptions, and Table 1 in Kerr's article on PVB19, ME/CFS, and IV immunoglobulins:
http://www.journals.uchicago.edu/doi/pdf/10.1086/374666?cookieSet=1
Back to the December Kerr article - my only concern is that he relied on bloodwork again, when there is quite a bit of research that one needs to also look at tissue biopsy. I suspect this might explain why
"CFS/ME patients and normal blood donors had a similar B19 seroprevalence
(75% versus 78%, respectively)."
(75% versus 78%, respectively)."
This is a thorn in the side of adequate diagnostics of persistent PVB19 - I believe it is grossly underdiagnosed because of our dependance on bloodwork. I posted a whack more on this at: http://www.forums.aboutmecfs.org/showthread.php?p=21352#post21352
That said, Kerr has possibly done more for ME/CFS patients with PVB19 than any other researcher. Here's hoping for LOTS more!
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IVIG is also used to supress autoimmune and autoinflammatory disorders as well isnt it?
Some of those symptoms sound like Ankylosing Spondilitis.
Some of those symptoms sound like Ankylosing Spondilitis.
Some more info:
[TK: This is available on the CFS Research Foundation's publications
webpage: http://www.cfsrf.com/Publications.htm - direct address:
http://www.cfsrf.com/pdf/JGV.pdf ]
[TK: This is available on the CFS Research Foundation's publications
webpage: http://www.cfsrf.com/Publications.htm - direct address:
http://www.cfsrf.com/pdf/ivig.pdf]
-------From Tom K.--------
Reminder that there were in total 200 patients with "CFS/ME" from the US and
UK in this study.
This would mean that 11/200=5.5% of CFS patients on average would have
Parvovirus B19 DNAaemia that could be found by testing at follow-up (i.e.
testing at the start of the illness isn't required) and be prime candidates
for intravenous immunoglobulin (IVIG)
As mentioned above, the 2001 study found that 4/5 (=80%) of those with
parvovirus B19-associated CFS exhibited B19
DNAaemia at follow-up. [In the 2001 study, the 39 patients with parvovirus
who were followed were contacted after a follow-up period of 2-37 months
(mean of 22 +/- 5 months)]. In the 2009 paper, the mean duration of illness
for the whole sample was 3.67 years or 44 months.
If it was the same rate at 3.67 years, a further 5.5%/4=1.375% would be
candidates for intravenous immunoglobulin (IVIG) (on top of the
aforementioned 5.5%) as their illness would have started with Parvovirus B19
(i.e. it would appear that 6.875% of cases of CFS started with Parvovirus
B19).
If the rate at 3.67 years went down to 60% (say - random figure less than
80% chosen as being less than 80), a further (5.5%/60)*40=3.67% would be
candidates for intravenous immunoglobulin (IVIG) (on top of the
aforementioned 5.5%) as their illness would have started with Parvovirus B19
(i.e. that would give a figure of 9.17% of cases of CFS started with
Parvovirus B19).
[TK: This is available on the CFS Research Foundation's publications
webpage: http://www.cfsrf.com/Publications.htm - direct address:
http://www.cfsrf.com/pdf/JGV.pdf ]
[TK: This is available on the CFS Research Foundation's publications
webpage: http://www.cfsrf.com/Publications.htm - direct address:
http://www.cfsrf.com/pdf/ivig.pdf]
-------From Tom K.--------
Reminder that there were in total 200 patients with "CFS/ME" from the US and
UK in this study.
This would mean that 11/200=5.5% of CFS patients on average would have
Parvovirus B19 DNAaemia that could be found by testing at follow-up (i.e.
testing at the start of the illness isn't required) and be prime candidates
for intravenous immunoglobulin (IVIG)
As mentioned above, the 2001 study found that 4/5 (=80%) of those with
parvovirus B19-associated CFS exhibited B19
DNAaemia at follow-up. [In the 2001 study, the 39 patients with parvovirus
who were followed were contacted after a follow-up period of 2-37 months
(mean of 22 +/- 5 months)]. In the 2009 paper, the mean duration of illness
for the whole sample was 3.67 years or 44 months.
If it was the same rate at 3.67 years, a further 5.5%/4=1.375% would be
candidates for intravenous immunoglobulin (IVIG) (on top of the
aforementioned 5.5%) as their illness would have started with Parvovirus B19
(i.e. it would appear that 6.875% of cases of CFS started with Parvovirus
B19).
If the rate at 3.67 years went down to 60% (say - random figure less than
80% chosen as being less than 80), a further (5.5%/60)*40=3.67% would be
candidates for intravenous immunoglobulin (IVIG) (on top of the
aforementioned 5.5%) as their illness would have started with Parvovirus B19
(i.e. that would give a figure of 9.17% of cases of CFS started with
Parvovirus B19).
K
I'm bumping this up as I've just got off the phone with my mum who says she thinks my niece has 'slapped cheek disease' as she's got the symptoms and it's going round her school. The reason I'm bumping this is because my niece had a very aggressive virus four years ago (she's 11 now) and she was never the same after it. I don't know if it's because I'm an ME sufferer and I'm worrying too much for her but she has sufferered from excessive tiredness and apparent mild ME symptoms since then. It's mild, but she doesn't do after school activities because she's too tired, she crashes out easily and she doesn't sleep well or feel refreshed. I've lived away for all that time so I don't know if she's complaining of anything else but she just isn't as energetic as she should be and there's something up.
Now I feel like she's at such a risky age. She's 11 (same age I was when I became ill) and she's probably got this parvovirus B19. I don't know if there's anything I can say or do, I feel so powerless, I just can't let her through what I did, not if there's something I can do. Is there anything I could suggest to keep her immune system in good shape? Either medically or eastern methods? I know I'm spooked by this, but with the XMRV question hanging around and the shadows under her eyes I can't help thinking that I should be doing something, even if I'm overreacting.
I'm so scared for her.
Now I feel like she's at such a risky age. She's 11 (same age I was when I became ill) and she's probably got this parvovirus B19. I don't know if there's anything I can say or do, I feel so powerless, I just can't let her through what I did, not if there's something I can do. Is there anything I could suggest to keep her immune system in good shape? Either medically or eastern methods? I know I'm spooked by this, but with the XMRV question hanging around and the shadows under her eyes I can't help thinking that I should be doing something, even if I'm overreacting.
I'm so scared for her.