XMRV Positive? What are your symptoms/medical history?

[Advocate]

As I was updating the survey, I got a big AHA. This survey is for anyone who tested positive. That would include those who are asymptomatic (4% of the healthy controls, family members that were tested, etc).

All of the wording in the survey assumes that the survey taker is sick. They may not be.

I think we've got that covered with the severity scales.

 

[julius]

Hey,

Just did the poll, picked up a few suggestions/problems,

#9 and 10- add an option for 'unknown'. I think a few ppl are like me and were too young at onset to know the answer

#24 I think acid reflux and GERD are the same thing.
....... Also 'loss of appetite' appears twice (one right after the other)

#26 costocondritis appears twice

#27 add raw or undercooked onions or garlic (those might be sulphur foods, but personlly I only have problem with those two)

#34 rather than negative/positive, should be normal/abnormal? (ie; EEG tests are not pos/neg)

 

[_Kim_]

Good eyes, julius. Thanks for combing it again.

 

[Cort]

What a great project! Are non positives allowed to vote? It would be interesting to see if we can find differences between the two groups. It looks like its really covering the bases.

On 8 I would add an other autoimmune diseases section (mother died of Sjogren's syndrome), MCS, and really, hate to say it, but mood disorders as well as irritable bowel syndrome

On 12 add none of the above. Why is the school in there?

on 13 I would put " the following occurred within six months of onset" or something like that. Maybe add extensive dental work.

How about? At the time of onset I was : Exercising strenuously, working long hours, under emotional or mental stress, none of the above

Definitely add muscle pain to 20 as well as increased chemical sensitivities (always for me), irritability, sleep problems, impaired coordination,

30 add growth hormone

what a great survey

 

[Advocate]

Hi Cort

Are non positives allowed to vote?

Definitely! Positives, non positives and people who have not been tested are all helping to construct the survey. It's just a draft.

It would be interesting to see if we can find differences between the two groups.

Yes. In fact, I think we've agreed that there will be three separate surveys--one for each group.

Why is the school in there?

Someone must have suggested it, based on personal experience, but I don't remember who. I guess we need to clarify.

 

[julius]

I am floored that with all these contributors we overlooked IBS. That's ridiculous!!

I don't really agree with the mood disorders being included though. I realise that they are often concomitant with cfs, it's very difficult to tell whether they are a direct result of the XMRV infection (which is what we are trying to figure out. Or, if pwc are depressed and anxious (etc.) as a result of the effects the disease has on their life.

I am sure there is a high correlation between depressions and spinal cord injury. But I don't think you would say that depression is a symptom of spinal cord injury.

 

[Advocate]

I am floored that with all these contributors we overlooked IBS. That's ridiculous!!

Nice catch.

I think we've also missed Diastolic Dysfunction (599,000 hits on google) and the accompanying tests. In his latest newsletter, Dr. Paul Cheney wrote that "diastolic [cardiac] dysfunction ... is seen in almost all CFS cases (>97%)."

I don't remember the exact figures, but something like 11 out of 13 (wild guess) of the samples Cheney sent to the WPI were XMRV+. Any Cheney patients reading this who can expand on it? If not, his favorite diagnoses and tests should be pretty easy to find.

I don't really agree with the mood disorders being included though. I realise that they are often concomitant with cfs, it's very difficult to tell whether they are a direct result of the XMRV infection (which is what we are trying to figure out. Or, if pwc are depressed and anxious (etc.) as a result of the effects the disease has on their life.

I'm with you on this. If we include mood disorders, it will only give fuel to the "militant somatizers." No matter what other symptoms are listed in the survey, their eyes will go to "anxiety" or "depression." I can see the headlines: "PATIENT SURVEY PROVES... " or "XMRV CAUSES DEPRESSION." I noticed that in the terrific Snell paper that was just posted, they did not use any reference to mood. Apparently, it was not on their questionnaires.

 

[Cloud]

Amazing Job....You guys decide to do something, look out. I would just add that I too don't see a reason to include education/school. That gets off into the social aspect and impact of the disease which opens a door to another huge realm of issues that seem to have little to do with the objective. Also, I agree about leaving psych issues out.

Standing ovation for a job well done!

 

[julius]

I found a survey being done by the National Fibromyalgia Association. http://www.fmaware.org/site/News2?news_iv_ctrl=-1&page=NewsArticle&id=9239

It might be worth having a look through to see if it gives you any new ideas for our survey.

 

[KC22]

When I read the question about school, I thought it was good. I was working in a school when I got sick. A year before, I tutored a 7th grader who was homebound due to unknown illness. Also, when I was at Dr. Lerner's last week, I spoke with a man who said he sees a high number of teachers with CFS. Ironically, a patient sitting next to him said she was a teacher, too, before she got sick.. Personally, I think it's a good question.

Kim, You have done an AWESOME job on this!!!! Thanks!!!

 

[julius]

I just had a though about mood disorders. Rather than ask do you have (insert mood disorder), we could ask the following;

If you experience mood disorders, in your experience do you feel they are a cause of your physical symptoms, or a result.....cause......result

I can say personally that I am positive my emotional difficulties are a result of my physical difficulties. One reason, among many, is that my physical low always precede my emotional lows. Not the other way around.

But try to get a bonehead GP to listen to that....not likely. Perhaps if we have hundreds of ppl stating that they are sure of the cause of their mood problems, it will lend some weight to our argument.

 

[leaves]

ehh my 2 c
I am not a big fan of the question
in addition, I think this is not especially interesting if we are interested in the difference in symptoms between xmrv+ and xmrv- people.
also, if people expect that their symptoms are caused by a psycological state they are in, they are unlikely to hang out in this forum.

 

[Cloud]

When I read the question about school, I thought it was good. I was working in a school when I got sick. A year before, I tutored a 7th grader who was homebound due to unknown illness. Also, when I was at Dr. Lerner's last week, I spoke with a man who said he sees a high number of teachers with CFS. Ironically, a patient sitting next to him said she was a teacher, too, before she got sick.. Personally, I think it's a good question.

Kim, You have done an AWESOME job on this!!!! Thanks!!!

Yep, Nurses and Teachers. #12 asks about environment at onset

 

[julius]

ehh my 2 c
I am not a big fan of the question
in addition, I think this is not especially interesting if we are interested in the difference in symptoms between xmrv+ and xmrv- people.
also, if people expect that their symptoms are caused by a psycological state they are in, they are unlikely to hang out in this forum.

Those are good points.

The reason I brought it up in the first place is that if we exclude mood disorders just so we don't give the psychoquacks any ammo, then we are making a biased study. It would be good if we could find a way to include them, but in a way that can't be misrepresented.

Also, it is possible that some mood disorders are caused directly by XMRV infection. If, hypothetically, XMRV is infecting the brain, you could have a higher incidence of certain mood disorders than in those not infected.

So, I agree that the question I posted earlier is not a good one for this poll. But it might be worth trying to find a way to include MD in our poll somehow. Just so we are unbiased.

I know I said earlier that I didn't want to include mood disorders, but I thought a little more on it. Probably theres no good way to include it, but it might be worth consideration.

 

[FernRhizome]

Is it still possible to add a couple more questions to the survey????????? Here's the two I' d love to add:

1) Is it hard to relax your skeletal muscles (when I go to bed it can take two hours or longer for my skeletal muscles to realax)

2) Question for women: Have you experienced any unusual breast growth, especially from particular foods, supplements, and medications
(this is a bizzare but real symptom that has happened to a number of us!)

~FernRhizome

 

[ukxmrv]

XMRV+

I'd like to avoid questions about mood disorders as well.

Ramsay in his work on ME wrote about emotional lability so I'm at home with this idea and well used to the emotional side of the illness. For me though, it is very small and paled with the strength of the physical stuff.

However, as others have said unless we can include them in a way that won't be twisted I'd like that excluded.

Can I also add that it appears no XMRV+ person appears to has asked them to be included or highlighted them as missing in the survey, so it appears that for the few XMRV+ here that they are a small, unimportant part compared to the strong physical symptoms.

 

[julius]

Leaves and ukxmrv,

This is good. At least now we have discussed the mood disorder thing and come up with some good reasons not to include them. Thanks for your points.

FernRhizome

I really like your suggestion about the muscle tension. I have absolutely noticed that in myself. Not just pain (which I do also have), but chronic tension in all skeletal muscles...like I am flexing all the time.

 

[Cort]

I had unusual breast growth - gynecomastia - occurred after I got CFS. It was removed.

Mood disorders - could ask about mood disorder post-dating the start of CFS or just leave it out. It usually is a question researchers ask and Dr. Natelson has found signficant differences between
CFS patients with mood disorders and those without; oddly enough those without had worse test results. .

 

[Cort]

Have to be careful about security; if the survey is not encrypted or secured - then that has to be stated up front since people are including medical information.

 

[Cloud]

XMRV+

I'd like to avoid questions about mood disorders as well.

Ramsay in his work on ME wrote about emotional lability so I'm at home with this idea and well used to the emotional side of the illness. For me though, it is very small and paled with the strength of the physical stuff.

However, as others have said unless we can include them in a way that won't be twisted I'd like that excluded.

Can I also add that it appears no XMRV+ person appears to has asked them to be included or highlighted them as missing in the survey, so it appears that for the few XMRV+ here that they are a small, unimportant part compared to the strong physical symptoms.

I think there are many who are keeping their xmrv status anonymous. Also on the anonymity issue....Cort, with the poll being anonymous, is there still some reason to be concerned about security?