Help us with the XMRV Survey - feedback, proof-reading, and comments needed

[ukxmrv]

XMRV +

I have used a relaxation technique for years and can relax skeletal muscles.

Boobs exactly the opposite. Smaller than other female members of the family and no obvious reaction to supplements, drugs etc.

We are all different and hopefully will understand the differences on day.

 

[julius]

I have sort of a strange 'symptom' to throw out there.

I have noticed that all the PWC's I know seem to look younger than their age, and appear healthier than the average bear. I'm referring to things like good complexion, generally 'good looking', healthy weight. Especially when you consider how little exercise we get.

Am I just crazy, or has anyone else noticed this? If so, could it be because we tend to have lower than normal hormone levels, cholesterol etc.?

Maybe, if others agree, we could include questions like;

Are you often told you look younger than your age?
How is your skin complexion?
Are you overweight/underweight/normal weight?
Other than known CFS related abnormalities, do your medical tests show that you are average or above average health?

BTW, all you ladies who have photos for an avatar....you look hot!!

 

[ukxmrv]

Julius,

XMRV+

Yes to the looking younger.

When the disease hits us all all put on weight. Lots of weight and well out of proportion to how much we eat and do not exercise. The affected members of my family look younger. However, we have the deathly pale or gray complexion rather than a healthy one. Dark shadows under the eyes and a frozen face with a loss of movement and normal expression.


I'm not sure how to measure "health" in a test - because I have low cholesterol and low BP then yes I am told that I am "healthy".

 

[julius]

ukxmrv,

I should clarify what I mean by complexion. I too have big bags and a deathly pallor. I meant a low incidence of blemishes and acne. Acne seems to be closely related to hormonal changes at puberty.
But really these are just my observations of the few CFS sufferers I know.

And by testing 'healthy', I mean that most of the standard tests docs run on me always come back spot on. It's the more obscure tests that are often talked about with CFS that my results are way off the norm.

But one vote for looking younger so far...that's cool. Thanks.

 

[ukxmrv]

Yes, Julius, you are right a low incidence of blemishes and acne. None of that in my " ME or CFS like" affected family group.

Very Oliy skin and hair - but no blemishes. Maybe the extra oil helps create the illusion of "youth"? We have few wrinkles. Some of us have a mixture of very oily and then very dry skin alternating over years.

Male pattern baldness doesn't help the men though. Otherwise youthful though.

 

[julius]

Funny, i just noticed elsewhere someone mentioned a thread about looking younger than your age. Does anyone know where this thread is?

 

[leaves]

ukxmrv,

I should clarify what I mean by complexion. I too have big bags and a deathly pallor. I meant a low incidence of blemishes and acne. Acne seems to be closely related to hormonal changes at puberty.
But really these are just my observations of the few CFS sufferers I know.

And by testing 'healthy', I mean that most of the standard tests docs run on me always come back spot on. It's the more obscure tests that are often talked about with CFS that my results are way off the norm.

But one vote for looking younger so far...that's cool. Thanks.

uuh I dont think thats right at all, us looking healthy. At least not the people I know. I have the occasional puffy face, small eyes and pale appearance and I totally break out if I don't watch my diet. My drs warned me that with my low hormone levels I will face early aging of skin, bones etc
however the lack of immune resistance does give us a 'vulnerable' look that people may find attractive.

 

[rebecca1995]

Great job on the survey, everyone! It really looks good.

I went through it last night and didn't realize I could leave suggestions in the white boxes, so I'll do that here.

- Add "Provera challenge" or "progestin challenge" to section with vaccines, etc. about what brought on illness. (Important now that Dr. Mikovits has said progesterone can activate XMRV.)
- #32: Add "fatigue" and/or "post-exertional fatigue".
-#33: Add a column for PCR. Many of us have positive PCRs for viruses and bacteria, esp. from MDL Labs.
- Should be "Borrelia burgdorferi", not "burgdorferei".
- Add Giardia to the list of infections.
- I agree with those who have suggested leaving mood terms such as "anxiety" completely off the survey. I feel that including them could be potentially misleading. If the white boxes for additional comments will be in the final version, people could type mood symptoms there if they want to.

Again...good work! :Retro smile:

:Sign Good Job:

 

[julius]

Sooo.....uhhh......anybody here?

What happened? This was cooking along, and then suddenly it died for like 3 days. Any updates on what's happening?

 

[valia]

Sooo.....uhhh......anybody here?

What happened? This was cooking along, and then suddenly it died for like 3 days. Any updates on what's happening?

Hi, I have come back, this one sounds funny but has caused me a few problems:


"Loss of discretion, volunteering unnecessary or inappropriate information"


It happens when I get confused, I seem to go into motor mouth mode and say all kinds of things, I would not normally wish to say.

 

[Marco]

- I agree with those who have suggested leaving mood terms such as "anxiety" completely off the survey. I feel that including them could be potentially misleading. If the white boxes for additional comments will be in the final version, people could type mood symptoms there if they want to.

I'm afraid I can't agree with leaving out symptoms such as depression and anxiety. I understand the concerns, but they are such a frequent and often disabling issue that to omit them would give an incomplete description. The Canadian Consensus document list them under neuroendocrine symptoms and with a multi system disease which targets the CNS it would be somewhat bizarre not to find these symptoms.

We complain often enough about biased research. To omit these symtoms is analogous to the psych lobby omitting symptoms such as post exercise malaise and POTS just because it suits their agenda.

 

[ukxmrv]

Marco,

I was commenting on my symptoms as a XMRV+ person and trying to feedback those that I have.

If the survey is to build a picture of XMRV+ symptoms then I'd like to include those that are relevant and major notes.

I guess you are commenting as someone who fits the Canadian criteria and who obviously feels that depression and anxiety are important. You don't know your XMRV status.

I don't see depression & anxiety as being symptoms of the disease in patients with ME (as per Ramsay) and never had in over 25 years of this disease. We are different populations. Emotional lability was the term Ramsay used. Not a major feature though.

If the survey is to compare XMRV+ to Canadian criteria then you may have a point. I'm not aware that this was the point of the survey.

If they are so "frequent" then why has no XMRV + person mentioned them as important or relevant?

 

[Advocate]

Update

Kim has sent me a pdf of the draft survey. It includes all of your suggestions from the little white "other" boxes on the survey itself.

I will put the survey into Word outline format, and then continue to add all of your symptoms. This will include your "other" comments, (Kim has already incorporated most of them) and I will go back through this string to make sure we haven't missed anything.

I will try to do some fact checking, spell checking, and maybe move some symptoms from one place to another.

Then Kim will use the survey software to make the changes. Once she starts to do that, your responses to the draft survey will be removed (forever).

We would like to get the survey published in a journal, but this involves a lot of behind-the-scenes work, which Kim has been doing. Publication will probably involve some major changes to the survey, including drastic shortening, so we are no longer focusing on that.

We believe most forum members want to get something up now, and see some results now, so that is now our focus.

Kim pointed out to me that the reason we started this project was first and foremost to give people who are XMRV+ a sense of what they all have in common in their illness. She and I don't want to lose that focus.

The survey belongs to members of this forum, and I believe that it should remain as it is, no matter how big and unwieldy it is. At this point, cutting it down would defeat the purpose of people being completely heard or believed.

So please know that Kim is working on it, and I am working on it. We are hoping to get it finished in a week, and will let you know if we can't make it in that time. Meanwhile, I will see whatever you post here.

P.S. It won't be perfect.

 

[thefreeprisoner]

P.S. It won't be perfect.

Well, hurrah for that.
Perfection is a pathogen for ME sufferers, as far as I'm concerned.

As somebody much wiser than me once said: "Perfect is the enemy of good."

Rachel xx

 

[julius]

Great to hear!

If you need help with spelling/grammar etc. let me know. I can help out with that.


Advocate,

After this is up and results are coming in, we can then revisit the discussion we were having earlier about having a 2nd, smaller phase of this poll. If we can trim off the results from this one, then we might have something that could be published.

 

[Cloud]

Regarding SNP.....I think the potential for a connection between XMRV and methylation malfunction issues, is pretty good. I have been curious about that one too. I have never had any of the Yasco tests but have felt for years that I have a detox problem. I'm not sure of the best way to put this into a question for the survey especially since many of us have not had the testing. One suggestion for consideration would be "Medication Sensitivities". And for me it's not so much a sensitivity......it's more like I get a feeling of toxicity after a few days on many different meds, herbs, etc.

 

[ukxmrv]

Ross, I am XMRV+ and have a MTHFR mutation. Have not has the Yasko tests though.

I think that there was a sensitivity to medication there - I remember saying yes to something like that?

Toxic is a good description and yes, over many things.

 

[spindrift]

It would be interesting to know if anyone had a blood transfusion or has donated blood.

 

[thefreeprisoner]

There is somebody here who is XMRV +ve and got it from a blood transfusion. I'll let the person concerned pipe up if they want to.

Rachel xx

 

[ukxmrv]

Spindrift - blood transfusion is there under question 13 about onset of illness

I don't think that the survey asks people if they have ever given blood.