Gearing Up for the Big Search for XMRV - WSJ Article

[lancelot]

Hi Lancelot,

Are you SURE the CCC are being used? How do you know that? If it is true, then this is great news. But I could see no indication of that.

If you click on the link to amy's wsj article, she says Lipkin is using Fukuda and CCC in the comments section. The Lipkin study looks like the gold standard. The truth is near!

 

[markmc20001]

once and for all

As long as the Lipkin "once and for all" is that a retrovrius is associated with CFS, I am happy with that!

 

[Cort]

But you agree the cohort is a VITAL issue though?

Absolutely, I think it is a vital issue because PEM appears to be unique to CFS and it is easily the problem that has most stood out for me.

 

[Cort]

Yep, he sure is.....He had a girl there from the CAA signing people up for quite some time. He seems to be somehow involved in this collaborrative study beyond just referring patients.

Isn't that something - I had heard that but I think he's keeping it under the radar. Well - the Biobank is a great idea- storing samples for future researchers to use and he's one of our best and most perceptive clinicians - so it makes sense that they would want him and he would want to contribute.

 

[Cort]

Re the 'infectious onset' - this relates to the problems of trying adequately define and quantify a 'sudden' onset against a 'non-sudden' onset, by retrospective self reports, in ill people subject to disbelief and social exclusion, some for many years.

Pretty much impossible.

Unfortunately, even Oxford criteria allow for a self report of 'infection' at onset, even if it was the FLU!

What a mess. The brightest stars in the heavens still can't get their heads around this even!

We're trying to get a survey together and I am really interested in onset. Is there any way to accurately assess onset?

 

[Angela Kennedy]

We're trying to get a survey together and I am really interested in onset. Is there any way to accurately assess onset?

As far as I know - no. That's the problem. Subjective retrospective self-reporting of a ubiquitous experience ('viral' infection) that might be flu - or something else, lots of different 'something else'. Take into account the tendency for people to try and explain things retrospectively (women with Down's babies used to report 'shocks' in pregnancy, before we learned the condition occurred at conception for example) by claiming "I was knocked for six immediately and it never changed at all" (and some of those accounts might even be true!) against those more circumspect: "I'm not exactly sure what happened." It's a minefield of potential error and confounding.

 

[Megan]

We're trying to get a survey together and I am really interested in onset. Is there any way to accurately assess onset?

For some people there is an accurate way. In my case I had EBV and have two sets of blood tests from the time to show thats what I had. Maybe this is unusual but there must be others out there who have similar circumstances with EBV or other illnesses.

 

[urbantravels]

I had a fairly sudden onset (flu-like symptoms starting around Halloween, and total crash at Thanksgiving), but the symptoms I was having at onset, as best as I can recall, weren't all that different from the way a flareup feels/has felt ever since. I had extreme fatigue, chills and muscle aches, but no fever or sore throat. As my flareups go, I think that first one was about average - I've had worse since. So it's not like things started with me having a clearly definable "other" illness that was much different from the ongoing course of my CFS.

 

[*GG*]

Absolutely, I think it is a vital issue because PEM appears to be unique to CFS and it is easily the problem that has most stood out for me.

I find PEM to be 1 of my major issues, I do know stay within my energy envelope, so my other symptoms are not as bad! But if I push myself to much I feel much worse in many regards. I was diagnosed using Fukuda, and did the Staci Stevens disability testing and failed "miserably", still do not know my XMRV status. I had blood drawn at the beginning of August for a NIH study. Not sure what methods they are using to search for XMRV. I am on LDN for over a year now, so not sure what impact that would have? I still work 30hours a week at most, thanks to FMLA I still have a job!

Getting tired of waiting for "results", but don't have the money to send my blood out to WPI for XMRV analysis. Perhaps after the holidays? I can live the way I am now, but just want to know my XMRV status, I know there are not any treatments, so what's the rush? I guess it's if I don't have XMRV, then I will be active to push the research to help me and others in my situation. My life is on hold, just want more of my old life back!

 

[eric_s]

I'm always impressed when i hear people are still working. Can you share some more details? I don't think i could work away from home and all i can do is non-physical work. I can read, think and type, talk, if it's not too much, and that's about it. If i were to work away from home, i would probably need a couch in my office or else it could not be more than one hour per day in order not to deteriorate over time. And i need to be able to park close to the entrance of the building and the building should not be too big

I realize some people have no choice... that's tough. I live with little money, but at least i don't have to do more than my body can take.

For me it's similar. I don't have a lot of symptoms, if i don't push myself. My only problem then is that i'm missing out on a lot. And when it's cold, i don't get to go out much. When i push myself too much, it might take 2 to 3 days to be ok again, depends. If i stop soon enough, i'm ok after an hour or two, no PEM.

 

[SDP]

For some people there is an accurate way. In my case I had EBV and have two sets of blood tests from the time to show thats what I had. Maybe this is unusual but there must be others out there who have similar circumstances with EBV or other illnesses.

I agree. As with many others, my CFS started with a severe bout of glandular fever that was confirmed by blood tests.

 

[free at last]

As far as I know - no. That's the problem. Subjective retrospective self-reporting of a ubiquitous experience ('viral' infection) that might be flu - or something else, lots of different 'something else'. Take into account the tendency for people to try and explain things retrospectively (women with Down's babies used to report 'shocks' in pregnancy, before we learned the condition occurred at conception for example) by claiming "I was knocked for six immediately and it never changed at all" (and some of those accounts might even be true!) against those more circumspect: "I'm not exactly sure what happened." It's a minefield of potential error and confounding.

This is very true, and my illness started with classic flu symptoms but two reasons to rule out flu are, i had these attacks many times in the space of 12 months, its very unlikely there was that many strains around. My family not only did not develop what could have been re occuring flu. But they also never developed it from me. and i find that statistically unlikely, Especially my partner not once developing it. So flu without flu, is the conumdrum for some i think, that appears non infectiouse ? Man i need a new keyboard

 

[Jemal]

I'm always impressed when i hear people are still working. Can you share some more details? I don't think i could work away from home and all i can do is non-physical work. I can read, think and type, talk, if it's not too much, and that's about it. If i were to work away from home, i would probably need a couch in my office or else it could not be more than one hour per day in order not to deteriorate over time.

At the moment I am able to work 30 hours each week. I work as an internet project manager, so a lot office work and not much travelling. If I had to travel a lot or do physical work, I would be useless. The brain fog was killing my work at first (not remembering words, making errors, floating), but high doses of B12 have helped tremendously. I crash a few times during the day and I just have to push myself to keep working. During the really bad days I go home earlier. I walk 30 minutes each day to the subway (when I first got my symptoms there were many times I was feeling too tired to walk about 15 minutes - that felt insane to me and I am glad I am now able to walk these distrances again). I am still able to do all house chores as well, though again I have to push myself sometimes.

Now, I think working is only possible when you have a mild case of CFS or have some control over it (and if you don't do heavy, physical work, like constructing buildings or something). I have read too many stories of people that are just too ill. On my worst days I have to rest after taking a shower, so I can relate somewhat.

There's one good side to this illness: I have hardened up a lot. My tolerance for fatigue has gone through the roof. I just keeping pushing myself... and pushing. I still have high hopes the medical community is going to find a cure or at least an effective treatment for us and that helps as well.

I remember reading about CFS/ME about a decade ago and I just couldn't understand why these people were unable to work. Now that I am ill myself I still have difficulty explaining why the fatigue is so crushing. It's just not normal fatigue, something you can try to shrug off. I remember that when I first told my boss that I was overly fatigued, he said he was tired too

The CFS fatigue does remind me of the fatigue I felt when I was plagued for a few years by a bad dust mite allergy. Because of this I still think my immune system is constantly fighting something. I beat the dust mite allergy, so that's another reason why I have hope I can get rid of this constant feeling of fatigue.

 

[pamb]

Hi Jemal,

What are you taking for B12 and how much per day?

Thanks!
Pam

 

[Cloud]

I agree that defining "infectious onset" is not always straightforward. I always assumed that those claiming an infectious onset had like an undeniable flu-like illness, that came on like the flip of a switch and they never got well after that. That is not what happened to me at onset...I didn't feel like I had an infection. I felt poisoned. But after that, the first 10 years for me was all immune symptoms (changed to neuro now) that felt exactly like the "flu that wouldn't go away"....but I never really had the flu (or any other acute infection as far as I know). My immune system was just spazn out. Every flare felt like catching a horrible flu all over again. So, it seems to me that defining "infectious onset", can be quite nebulous.

 

[Jemal]

What are you taking for B12 and how much per day?

I am taking melt-tablets with 10 mg B12 (it's 400.000% of the recommended daily dose in the Netherlands). I take a tablet each day (4 are allowed according to the info on the box!), before I go to sleep as this seems to work best for me (I took them in the morning at first, but those mornings I noticed fatigue increased, before I got more energy).

The tablets are from Bloem and called Recovery Power. It's a Dutch brand.

Sorry for the late reply, but my wife gave birth to two healthy boys today

 

[ukxmrv]

Congratulations to you and Mrs Jemal, wonderful news! Hope your wife is doing well.

 

[Jemal]

Haha, sorry for the threadjack.
The wife is doing fine and the babies are ultra cute. At the moment my energy is totally drained though, but even without CFS it would have been a difficult day I guess (at least energy-wise).

 

[Navid]

congrats on the new babies. they certainly are exhausting. hopefully you and you wife have some help....friends/family.


cheers and congrats!!!!!

 

[Cort]

I agree that defining "infectious onset" is not always straightforward. I always assumed that those claiming an infectious onset had like an undeniable flu-like illness, that came on like the flip of a switch and they never got well after that. That is not what happened to me at onset...I didn't feel like I had an infection. I felt poisoned. But after that, the first 10 years for me was all immune symptoms (changed to neuro now) that felt exactly like the "flu that wouldn't go away"....but I never really had the flu (or any other acute infection as far as I know). My immune system was just spazn out. Every flare felt like catching a horrible flu all over again. So, it seems to me that defining "infectious onset", can be quite nebulous.

Was there any trigger to your illness? Or was it like a gradual slide?