XMRV Positive? What are your symptoms/medical history?

[_Kim_]

Kim,

That would be really cool to publish this. I think one problem would be that we have no way of validating that only XMRV+'s are responding.
Personally, I trust the people on this forum...but I don't think trust would really be good enough for a proper publication.

Oh these days you don't need to do a proper study to get published. All you need is a few hundred dollars to throw at PLos and they'll have it up on their website within a month's time.

Off the top of my head I can't really think of a way to filter the responders thoroughly enough. Especially since most people would want to be anonymous. Or...then again...maybe people wouldn't mind giving their names.
Any thoughts?

I just checked the IRB website to see what the rules are for anonymous surveys and found this: Web-Based Survey Research

Web-based survey research requires the researcher to obtain participant consent.

Sample Methodology:

• Send a preliminary e-mail to request participation.
• Include a confidentiality section on the consent form that covers how the participants will remain anonymous. This statement will guarantee the participant's e-mail address or other identifying information is not included when the survey is submitted. Provide the subjects with the link to the consent form, and not the survey itself.
• Typically there will be a line that states, "I certify that I am at least 18 years of age" and "By clicking on the following link I consent to participating in this study."
• Should the subjects consent they will then click on the link to the survey normally located at the bottom of the consent form.

 

[julius]

Nice work Kim.

Maybe you could add a declaration that says "I have tested positive for XMRV infection." Just to cover all bases.

Also, there must be some sort of reference number on the test results from WPI. Maybe they could include that number and still retain anonymity.

 

[_Kim_]

Nice work Kim.

Maybe you could add a declaration that says "I have tested positive for XMRV infection." Just to cover all bases.

Also, there must be some sort of reference number on the test results from WPI. Maybe they could include that number and still retain anonymity.

I added it as the first question.

Pages 5-7 are now Jody Basset's THE HFME 3 Part M.E. Ability & severity scale.

Check it out (still in black/white for Advocate to copy into Word)

 

[thefreeprisoner]

:Sign Good Job:
Oooh this is brilliant.
I am so excited about this study.

Next up: our own randomised controlled trial of different treatments?

It's like we're doing open-source science!
If only I could jump up and down, that's what I'd be doing right now...

 

[fds66]

Will the results just be a cumulative percentage per question -(50% of people have a lavender nose) or will there be some information about how the symptoms cluster -( so all the people who had lavender noses also had yellow knees)?

I think the Kerr gene study came up with types based on clusters of symptoms but I may be wrong. I suppose it depends if the results are saved as a percentage per question or whether each person's answers are saved separately and can be clustered together.

 

[Alice Band]

The survey looks good and I am very grateful to all of you who have taken the time to create this valuable resource

Before the survey gets rolled out would you be happy for a few XMRV+ people to test drive it first. I'm just a little concerned with so many non + people creating the survey that something big will be missed.

 

[DysautonomiaXMRV]

Hi Dys,

There's a practice survey up here. We, as a group, are still in the process of developing the survey. So take a look at it, and come back with your suggestions.

Your responses on the survey form will be wiped out after you look at it.

In case you don't want to read the whole string, I think the latest consensus is that we will use the same form to survey three different groups of people: people who are XMRV-positive; people who are XMRV-negative; and people who have not been tested.

Hello, thanks for the link!
What a fantastic survey, really impressed.

Such relevant and detailed questions on there.
Who ever made it, a big well done and also to everyone on here who is discussing this.

 

[Nina]

Thanks everyone who helped create this! Looks very professional.

I posted this before but it might have been overlooked:

In her webinar, Dr. Batement stated that a typical sign of retroviral infection is nerve damage.

Should we include neuropathic pain and paresthesia (tingling, numbness)?

And possibly muscle twitching (fasciculations)? This is a very common symptom in ME/CFS as far as I know.

What about heart palpitations and arrythmia?

Just thinking out loud.

 

[julius]

Hi Kim,

Just went through it again, looking better and better all the time.

A couple thoughts.

section 3
fatigue that is incapacitating and unrelieved by sleep......maybe split into two questions?

sect 4
inability to block out background noise and focus on conversation......also two separate questions?

and I still feel that a section titled 'endocrine function' should be added. Answers would be;
salivary cortisol ............normal ... low ... high ... not tested
testosterone (any) ........ normal ... low ... high ... not tested
Thyroid function ..........normal ...low ....high...not tested
(and any other hormonal imbalances common to CFS, if anyone has any to add)

Thanks so much for all the hard work

 

[CJB]

I know I'm showing up a little late, and I haven't tried to read the survey, but things I would want to know are

1) Any RH factor issues? Do you or mom have RH negative blood type.

2) Any carpal tunnel issues

3) Any appendicitis

4) Arthritis

 

[Katie]

I know I'm showing up a little late, and I haven't tried to read the survey, but things I would want to know are

1) Any RH factor issues? Do you or mom have RH negative blood type.

2) Any carpal tunnel issues

3) Any appendicitis

RH negative?

 

[CJB]

RH negative?

Wiki

"Rh factor

Individuals either have, or do not have, the "Rh factor" on the surface of their red blood cells. This term strictly refers only to the most immunizing D antigen of the Rh blood group system. This is usually indicated by Rh positive (does have the D antigen) or Rh negative (does not have the antigen) suffix to the ABO blood type. However, other antigens of this blood group system are also clinically relevant. These antigens are listed separately (see nomenclature below). In contrast to ABO, immunization against Rh can generally only occur through blood transfusion or placental exposure during pregnancy"​

.

The only reason I'm curious about this is because Rh positive babies born to Rh negative mothers have an increased risk of developing Multiple Sclerosis as does having a member of the family with CFS. Curious if there's any correlation.

 

[hensue]

Katie what a good one I have rh negative also and the shots after pregnancy. I have the Rh factor are the shots called rhogam?

 

[Katie]

Katie what a good one I have rh negative also and the shots after pregnancy. I have the Rh factor are the shots called rhogam?

Was CJB actually

Thanks CJB, learn something new everyday!

 

[Alice Band]

The members of my family who have ME or like ME have abnormal cervical smear or have had cervical cancer. Are "night owls" well before ME strikes. All have large moles or warts on their body ("beauty marks on their faces)

 

[Mark]

This may not be the best place to make this observation but I could put it in a number of places, and I also wanted to say what a great job you're all doing on this thread. Open source science? Absolutely! I was calling it democratic science, but whatever you call it, it has the potential to be a very significant movement.

Anyway: my observation. I was looking again at the sticky polls for XMRV tests, and a couple of things jumped out. The more obvious point is that the overall percentages are holding up and are strikingly consistent with the WPI findings. Considering that this is a self-selected patient group, and that we still have 67% positive on Culture tests, that's quite remarkable. On its own it suggests that the tight patient criteria weren't essential to getting the results the WPI got.

But the more important point, relevant to this thread, is that there is no difference between the rates testing positive based on the strength of their symptoms - the percentages look to be the same whether you have 'moderate' or 'severe' ME/CFS. That already looks very signficant to me in relation to the concern that it might be only the 'sickest of the sick' who were tested, and who are testing positive. Our poll results seem already to be the first public domain evidence on this question, and they indicate that 'moderate' ME/CFS is testing just as high for XMRV as 'severe'. Points towards the applicability of the findings to the wider CFS community rather than just the "acute post-viral" subgroup - the WPI had made a subtle comment to this effect, but this forum's polls are the first ever evidence of that.

Just thought this point might be of help to people interested in this thread - your detailed survey has the potential to reveal much more than this though...so do carry on with that!

 

[hensue]

This is a great survey already showing insight into this xmrv puzzle and on and on and on. Seems like preliminary results of positive 4 people have sampled surveyed.
need to back up where Kim posted and you can go to the survey.

I think we will really get a lot of info and cannot wait to see what the people not positve what there symptoms are.

Mark you have pointed out interesting facts already.

 

[flybro]

Thatr blood group thing is interesting to me.

My fathers mother had a-typical MS, my Dad was a rare blood type, my mum a common one and I think I'm the same as my mum.

 

[leaves]

The members of my family who have ME or like ME have abnormal cervical smear or have had cervical cancer. Are "night owls" well before ME strikes. All have large moles or warts on their body ("beauty marks on their faces)

That is so weird,!! In my family we have the same (except for cervical cancer and me) !! I have it too... and I tested positive. Another symptom I have I forgot about; huge drops in blood sugar and another one; osteoporosis. Oh and also hair loss, hick ups and chills.

 

[Sushi]

I just did a "trial take" of the survey--WOW! Great job team!

The only one I stumbled on was: # 27 " I became ill after getting vaccinated for...." I think for many of us, (certainly me) I was already ill but multiple vaccinations (a lot of travel, working in a hospital) exacerbated my illness. Is there any way we could include this scenario?

Thanks,
Sushi