WPI adds "XMRV Research" Tab/ Research Form

[leelaplay]

Hi Guys! (Laurel, Amy, George, Kim) I filled out the Questionnaire (last night) and didn't even receive a robo answer/e-mail.

I can't believe what I entered for "NPI#"....my insurance company name!!?? oh pooh!

Thanks Kim, for the link - I just looked up the "real" NPI# for my doctor.

Now what do I do?

jackie

Hi jackie - I think if you just emailed them and told them what happened they'd get the info corrected

info@wpinstitute.org


islandfinn

 

[KC22]

I filled out the questionnaire last night and did get the generic e-mail back. I didn't fill out the NPI. I hadn't scrolled down to get the address.
I just put in Dr. Lerner's name and phone number. I guess it worked....

 

[annunziata]

I want them to want me

I just re-submitted the form, this time putting in my doctor's NPI # instead of her Lic #, and this time I got the automated response. I hope they vant my blood.

Amy

 

[LaurelB]

I just resubmitted my form too but still did not get a confirmation email. Oh well. I will have to assume they got it, as I don't have the stamina to fill that thing out again. I did email them at their info email address to ask for a confirmation, but got no reply as yet. Hopefully it was received!

 

[Martlet]

I have filled out the form and received their standard thank you email.

Thank you for submitting your research questionnaire to WPI. Your information will help us understand more about the prevalence and impacts of neuro-immune diseases.

In many cases the information you have provided will be enough for us to learn more and you will not be contacted for more information or blood samples. Some people may be selected for inclusion in future studies, and if you become one of those people, we will contact you for more information and possibly blood or similar samples. If you are not selected for future studies, please know the information you have submitted is helping us as a part of our research database.

Again, thank you for your willingness to help.

The fact that many of us will not be asked to participate further suggests to me that responses will be welcome from all across the world. As they say, it helps them to understand the prevalence of these diseases, so I would go ahead and fill it in. If they can't use a given response, they can always exclude it from their database.

 

[Cort]

Not a good form

I was disappointed by the survey - particularly the symptom questions. That was a very short list of symptoms and they didn't list my major one - fatigue/pain/concentration problems exacerbated by exercise/activity. I never exhibited 'profound weakness'; instead I have pain and fatigue associated with exercise. There is a huge difference between those two symptoms; the fact that they're only interested in one of them again makes me wonder if there are interested in one type of chronic fatigue syndrome patient.

They also missed several important symptoms for me; orthostatic intolerance, chemical sensitivities, and a few others which I can't recall but which I mentioned in my response.

Then when they asked for your present symptoms they didn't give you any buttons to check - instead you had to spell them out. This is problematic for two reasons; first it's more work for the survey participants but more importantly when you have people spell out something on any form it quickly turns into gobbledygook since people use different words to describe the same symptoms. It's basically standard practice to have people describe as little as possible.

Plus its impossible to store in a database - a key reason for doing this form - so if they were looking for people with a certain set of symptoms - there's no way for them to do that.

Then they asked for people to list relatives with neuro- immune disorders and didn't give a list of what they are (except for autism. MS). They're going to miss people who don't know all the neuro- immune disorders. Again if they want to search for subsets of patients with relatives with specific neuro- immune diseases they're not going to be of the do that easily with this form; they'll have to look through each contact in order to see which neuro- immune disease they clicked on.

Their list of comorbid disorders was short as well.

Sorry to bang on them but I think this form could have been much better. They could have provided a comprehensive list of symptoms, as well as diseases, etc. - they could have built a great database that they could have mined later on. It's pretty clear that either that was not an important goal here or they're just way over their heads regards to data collection.

 

[Cort]

While I'm on my binge here - this

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested.

is a not a great statement to come out of a research Institute. As someone pointed out the reason this is true must be that most ME/CFS patients tested positive and they swamped the fibromyalgia and MS patients. 95% of the FM patients did not test positive for this virus! but that's what many people are going to be led to believe.

Its hard to imagine that the statement is true anyway. I think the original study had, what 100 CFS patients and two thirds of them tested positive which means that 20 of them did not. Just those 20 negative ME/CFS patients bring the total of the more than 200 patients tested below 90% - not to mention the non positive FM patients.

It could be that they're using a newer and better test that is picking up more infection or it could be they're referring to antibody testing. That would make sense - but they're not relaying that information; which leaves the door open for people to think that they've made a mistake. If its new testing I think they should say so; if its antibody testing I think they should say so.

They are making little mistakes - possibly because they are overwhelmed. First they stated in the paper that everybody in the Science cohort had X immune regularities then they stated not everyone did. This can stuff can catch up with them in research circles where they rigorously dot every i and cross every T.

It doesn't negate at all the broad research findings but it would be nice if these little glitches didn't occur.

 

[Martlet]

Cort

I too was surprised at the limited number of symptoms and the need to spell out current symptoms, as well as additional symptoms. While I did have weakness at first, when I had "the flu", that quickly gave way to pain and fatigue after minimal exercise. Today, seventeen years in, I can do a lot more than I could in the early years before the pain sets in, but I now have multiple chemical sensitivities and allergies to three types of antibiotic as well as mold, pollens and a host of other things that I did not initially have.

As well as missing some major symptoms, I don't believe they went out far enough in familial illnesses. My grandmother had FMS, although that's not what they called it at the time. Perhaps it is not relevant, but I still have to wonder.

All that said, I am still very, very grateful for the work they have done so far. I just hope they are not (a) looking for too narrow a group of CFS patients or (b) trying to reach too far beyond CFS before they have replicated their initial findings in a larger section of the CFS/ME community.

 

[anne]

Cort, they did actually say in later studies they found it in something like 98 out of 101 people, once they improved the testing. I don't know whether that's antibodies or not (though my husband just left Dr. P's and cannot get an antibody test now, just active infection). I do agree that the writing is imprecise and they should slow down and explain.

Oh, and I agree on the survey. What the heck is a neuroimmune disorder?

 

[Cort]

I just think they missed or are missing a golden opportunity to gather a really great database on chronic fatigue syndrome patients. They could've gotten a lot of information and then used it to tease out subsets for instance and then really target a group that they wanted to focus on. It would have been great for instance if they'd thrown in an assessment of functionality or disability. They don't know for instance based on this form if the patient is really really ill or moderately ill, etc.

That's a good point about fibromyalgia - it be a good thing for genetic studies if they knew who's relatives had FM, or MCS or IBS but for some reason they ignored these diseases that are commonly comorbid with CFS. If they wanted to do a gene polymorphism study in the future they could have gone right to these patients with a family history of these disorders. Now they're going to have to find another way to get those patients.

I assume they do this kind of stuff with patients that see Dr. Peterson or with patients who get in the research studies. As someone who's trying to create a database myself for ME/CFS - it was a bit frustrating to fill out that form

 

[Jenny]

I agree Cort. There are all sorts of problems with this questionnaire that could have been easily rectified.

To add to your list - one question asked if the respondent had any children with these types of illnesses. If this answer was left blank, they won't know whether it was because the respondent has no children, or because they have children but they are not affected. What a missed opportunity!

Jenny

 

[anne]

Cort, you should email them. Seriously.

 

[Martlet]

Cort, you should email them. Seriously.

I second that!

 

[Advocate]

Disappointed

Hi Cort,

I, too, was extremely disappointed by the questionnaire, and I'm glad you pointed out some of the problems with it.

The questionnaire should at least give people a way to make a self-assessment of function--such as David Bell's disability scale.

Yes, they are missing a golden opportunity. I know that you could do it right, and I'm hoping you can get through to them.

 

[jackie]

Hi Guys! Boy did I have trouble filling this out?! I had to go through my personal (Doc/lab results) files and I added EVERYTHING that I'd been dx'd with!

This included lots of the Neuro stuff (Trigeminal Neuralgia, Asymmetrical Myelopathy, C-fiber Neuropathy etc.), as well as all the Enterovirus stuff I'm being treated for.

I somehow squeezed in that both my parents had cancers. Father had Parotid (Salivary) Gland Cancer & Prostate - mother had B.C. AND the family history with Alzheimers (which I thought was signifigant)

I had to write it all in the section for current probs. Never having filled out such a Questionnaire - I didn't understand about limiting my answers. I figured if they wanted to know my history they were going to get it!

I realise that these forms might be read by a computer? Is that the way it works? I doubt that mine was accepted.

Unfortunately I didn't understand about the "NPI#" and entered the wrong answer. I didn't receive an E-mail confirmation...and frankly, I'm too darned tired to fill it out again!

Islandfinn suggested that I e-mail them - but I don't think I could repeat everything I wrote - right now, anyway!

Oh well...I tried! jackie

 

[Advocate]

Everyone is invited to participate.

The best online survey I've seen is one that was done by the Immune Deficiency Foundation.

First they snail mailed you a personal code number. Then you went online and entered the code number so the survey would come up and you could access it. This ensured that no one would do it twice.

The questions were logical and extremely well done, and I wish I had copied them, because once the survey was finished there was no way to access it again.

As I recall, if you answered "yes" to a question, then you were asked more questions that went into great detail.

On their website they write:

IDF's success is largely because of the critical nature of the quantitative data it has collected from national surveys of patients and medical professionals for the past decade. This survey data has been used effectively with the government in quantifying the impact of the IVIG shortage several years ago, in helping change clinical trial design, and more recently in demonstrating the impact of reimbursement changes on patient care. This data is also used by immunologists and other physicians in educational sessions that outline patient treatment and diagnosis experiences, as well as by industry in understanding the demand for and efficacy of IVIG replacement. IDF Survey data is often cited in medical journals, government sponsored reports and by the media.

(This is the first time I've tried to use gray quote boxes. Hope it works.)

The IDF officially established its Survey Research Center in 2007 to provide timely and accurate data and analysis on issues of importance to the primary immunodeficiency community. Building on IDF's position and experience, the Survey Research Center is able to effectively generate accurate and current information on issues concerning primary immunodeficiency. It provides a mechanism for ad hoc data collection and analysis on issues such as IVIG reimbursement, opinions about subcutaneous products, and other emerging concerns. This information is essential for planning and regulatory purposes.

More information here:
http://www.primaryimmune.org/survey_research/survey_research_center.htm

I will contact them and try to get more information about who did their survey. It was a professional survey organization, I think.

 

[leelaplay]

I agree that the questionnaire is severely flawed. It actually concerned me about the quality of their research in general.

I think anyone who has a concern about it should contact them directly; we shouldn't leave it up to Cort. I think numbers speak. If just Cort emails, not matter how valid his points, it doesn't convey the concern that 100 emails would.

Because Cort did such a great job delineating the flaws, and because I'm extra tired today, I'm just going to say I'm concerned and that I agree with Cort's points.

Here's the email address for their

Research Program Coordinator
patientinfo@wpinstitute.org

and the general email
info@wpinstitute.org




islandfinn

 

[Jenny]

If you email them, perhaps also ask them to clarify what 'We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested' means.

What does 'XMRV is greater than 95%' mean grammatically? Or do they mean 'XMRV in greater than 95%'?

 

[Marylib]

Purpose of survey

Having read this survey, it seems to me that they are looking for a few red flags to pop up in someone's answers. Looking for a small group I guess, perhaps only those who have certain cancers in the family, or have had certain cancers themselves?
I am only guessing, but any "general" survey on CFS that does not include insomnia as a symptom is pretty strange.

 

[George]

e-mail/mail collection

Since they are interested in address's and doctor information it could just be a way collecting information for later mailing or a way or looking at geographical groupings? Dr.'s names that come up often as a way of setting up clinical s with the most used doctors down the road???

At this point they may be ready to toss any diagnosis out the window and start fresh. Which may be why they are not getting lengthily in the survey right now.

I would say that this group is probably the most diametrically opposed to the CDC. They knew the politics going into this study and so they knew it had to be beyond perfect. That may not reflect the over all dynamic of the group. While this team may seem like our own personal saviors they haven't been together very long. They also don't have a lot of money to work with.

It may be who ever handles website and office stuff isn't very good or may be Overwhelmed and the rest of the very small team isn't checking up on details.

It wouldn't hurt for us to make some polite pointers. Heck maybe they could use some volunteers to do some of the work for them. None of us are capable of doing very much be but together we may be able to fix the problems. (shrug) who knows. Get all of the CFS/MEers together and you've got probably 2 or three good office personnel (big grins)