Sofia Greene's internet survey

It was the great idea of a single sufferer from persistent aura without infarction, Sofia Greene (subject #1), to use the internet forums devoted to chronic visual disturbances as a means to collect data on the condition via a standardised questionnaire (see Sofia's websit e with both the questionnaire and her own responses).

If we all just ignored it, nothing would ever get done on visual snow

"I think the best strategy is to take action and seek answers, try drugs, etc. and ignore it as much as possible in the meantime - that 99% of the time when you are forced to live, work, and play and you are not in a doc's office explaining symptoms, swallowing pills, etc.. YOU CAN DO BOTH!!! YOU CAN IGNORE THIS AND AT THE SAME TIME TAKE ACTION, SEEK ANSWERS, AND NOT WORRY SO MUCH. Action is the keyword… If we all just ignored it, nothing would ever get done on visual snow. Sofia Greene and George Farmer, God bless them, decided to DO SOMETHING ABOUT THEIR VISUAL SNOW besides just 'ignoring it'. I am sure that every day, they both do their absolute best to live on and ignore it in between time just like the rest of us. However, thanks to Sofia Greene's actions, we are getting somewhere with a good survey that will lead to future studies. Thanks to George Farmer, this current forum exists which has attracted hundreds and generated more data on this condition than can be found in all medical journals that talk about visual snow (I could probably count the number of medical articles talking about visual snow with one hand)…"

(starrant [subject #138], Ezboard forum Visual snow or static – Discussion - Rite... for everyone to read...., February 7, 2007)

While this project began as a joint endeavour between the patient and her doctor, Dr Frank Clifford Rose, Director and Consultant of the London Neurological Centre at Alliance Medical, Honorary Consulting Neurologist at Charing Cross Hospital and a Trustee of the Migraine Trust, Sofia has since established further cooperations with Dr Dominic ffytche, Senior Lecturer at the Centre for Neuroimaging Sciences of the Institute of Psychiatry, London, who researches the relationship between the visual brain and the visual mind, and the Co-Editors in Chief of this website Dr Markus Dahlem and Dr Klaus Podoll, the last mentioned association offering the possibility to make available information about the results of her survey on a large non-profit medical website (with a total of ca. 500.000 visits per year) for migraine sufferers, their relatives, doctors, and scientists.

Sofia Greene's internet survey, last revision February 2006 (still open for further submissions)

Dear All,

I am doing a research project on "Status Migrainous" with the visual problem, as opposed to the constant pain problem. This project has the support of a team of specialist doctors: Dr Frank Clifford Rose (London), Dr Dominic ffytche (London), Dr Markus Dahlem and Dr Klaus Podoll (Migraine Aura Foundation). This team will be responsible for the assessment of all results.

I am a "lay person" in the world of neurology. I work in fact as an artist, and having recently developed this vision problem I am determined to make it stop. I plan to compile as much information as I can from the internet and present it to the doctors listed above. Whatever they conclude or come up with I will share with everyone who has participated, and who knows maybe we will find a cure!

The project is for anyone who feels that they might have persistent migraine aura, prolonged migraine aura status, persisting visual disturbances or has a vision problem that lasts for long periods.

If you are interested, please fill in the questions below and email it to: statusmigrainous@yahoo.co.uk and/or to kpodoll@ukaachen.de. Please try to cut and paste it to your email so I don't have to open attachments. If you wish, you may add illustrations which depict your own visual experiences. Include as little or as much information as you like; I will make sure that all your information is kept confidential and nothing will be passed on to any third parties without your permission. I am optimistic that we will come closer to a solution through this joint endeavour and I promise that the results of the survey will be shared with everyone who has participated in the survey. The results will be available on the website www.migraine-aura.org.

Thanks for your help!

Sofia Greene

1. Name or screen name (optional):
2. Email (optional):
3. Location (optional):
4. Age and year of birth:
5. Sex:
6. Nationality:
7. Race (optional):
8. Do you have classic (migraine with aura) or common migraine (migraine without aura)? When did it begin?
9. What do you take for your classic or common migraine and does it help?
10. Have you been diagnosed with persistent migraine aura or prolonged migraine aura status?
11. What is your visual problem and how long does it last?
12. Any other problems that you think might be related?
13. What do you take or do for your vision problem and does it help?
14. Have you found a trigger for your vision problem?
15. What tests have you had and the results?
16. Drug history (pre-persistent visual symptoms)?
17. Drug history (post-persistent visual symptoms), effect of drugs on persistent visual symptoms (negative, positive, not at all)?
18. Do you have a positive family history for migraine? If yes, who is affected?
19. Other information you want to provide?

The idea that the Ezboard forum Visual snow or static, founded by George Farmer (subject #200) in August 2001, could be used by medical professionals as a virtual focus group (Moloney et al., 2003) in order to collect desperately needed qualitative and quantitative research data on an isolated and understudied patient group, has been discussed by users of this forum as early as June 2005, 3 months after the launch of Sofia Greene's project of an on-line survey on persisting perception disorders and 9 months before its revision, expansion and transformation by Dr Klaus Podoll into a web-based virtual focus group study. The use of a virtual focus group is defined as an internet-based research method that utilizes electronic mail (e-mail) and/or posts on internet forums to unite spatially and temporally separate participants in a text- and image-based group discussion (Haas, 2000). The virtual focus group process generates rich and detailed qualitative data which can be further scrutinized by quantitative methods of content analysis.

WAKE UP CALL

In a discussion dated June 17, 2005, iuris (subject #192) and other users of the Ezboard forum Visual snow or static sketched a project that was not materialized until the start of the virtual focus group research project based on Sofia Greene's survey some 9 months later.

"So what can we do? Take matters into our own hands. One thing reasonably achievable is a statistical analysis of data sets. And I don't mean surveys with 4 questions. I'm talking about strict scientific-statistical method with things like chi-squares and correlation coefficients. We could actually PROVE that there is high comorbidity with anxiety disorders, PROVE that there is a relevant connection to migraine, PROVE that certain medication improves symptoms.

Unless we start something like this this group and its board will always look the same: people coming, complaining (legitimately) that their doctors either laughed at them or at least honestly said they don't have clue and finally leaving having given up hope."

(iuris [subject #192], Ezboard forum Visual snow or static - Archive 1 - WAKE UP CALL, June 17, 2005)

"It takes a dedicated person to organize such a matter, not to mention enough support and willingness from a community that is usually depressed and negative. There have been many attempts to create surveys, gather data, and what not on this board and they have all ended in failure due to lack of interest, the organizer backing out, or the lack of organization and purpose of the venture. Unless you can get someone who knows what he or she is talking about, has the best of dedication, understand what data must be collected and how to PROVE it or form a theory or whatever, and allow the information to be easily collected in a very presentable and efficient manner, I don't think anything will change. It's not that we don't care but sometimes things just have to be spoon fed to us by someone else as its difficult enough as it is to take matters into our own hands."

(silverwolf0, Ezboard forum Visual snow or static - Archive 1 - WAKE UP CALL, June 17, 2005)

"I think its also a matter or time and money. How many people are willing to take on a project as large as this with no pay. That's the reason doctors won't help us much, we need to pay their time so they can do things properly. I'd suggest we discuss this with a research University or hospital. In order to do so, we first need to get some cash together to help pay for an initial consulting. Someone will have to go out and contact these professionals/researchers and start talking to them to get a handle on the problem. From there we'll probaly be refered to a few places. At that point we need to figure out who seems like the best bet (or even get a diverse medical team), once we get that far it will probably cost a bit to get the person to just do the preliminary research. After that they should have recommendations and an idea how to further develop a research plan. Once a plan is in place, it will be necessary to pay for such a plan and implement it and revise it as we go. Sadly this is how things get done in the professional world of research...

Also it would be necessary to have a dedicated topic/board maintained on the web (or this site) which can update and post new info. It would need to act as an information system to keep members up to date on needed info."

(GrandPrixNate, Ezboard forum Visual snow or static - Archive 1 - WAKE UP CALL, June 17, 2005)

"Have each person give a history of their VS case. This will begin the documentation and data collection system. Next we need to organize and revise the documents and create a single document containing each person's case information. The idea being to create an information pack of sorts that will catch the attention, if they see multiple people who have the same issue and they can view each person's case maybe they will take it seriously."

(GrandPrixNate, Ezboard forum Visual snow or static - Archive 1 - WAKE UP CALL, June 17, 2005)

A fundamental difficulty with focus groups is the issue of observer dependency: the results obtained are influenced by the researcher, raising questions of validity. The issue evokes associations with Heisenberg's (1927) famous Uncertainty Principle. As Heisenberg said, "What we observe is not nature itself, but nature exposed to our method of questioning." Indeed, the design of the focus group study (e.g. the questions asked, how they are posed, and so on) affects the answers obtained from respondents. In focus groups, researchers are not detached observers but always participants. After having joined the Ezboard forum Visual snow or static with the internet pseudonym ksomething on March 30, 2006, Dr Klaus Podoll became a participant observer of the community, contributing with a mean of 180 posts per month to ongoing discussions and to the reception of new members who are inivited to participate in the Sofia Greene research project. Given his visible participation, the extent of which could not be overlooked, it's no surprise that ksomething became incorporated into 2 cartoons drawn by users of the forum (see here and here).

The Observer Observed

"I am going to start recording KLSP values (the Ksomething Latency to Survey Posting). And I'm going to see how this relates to the KFRP (the Ksomething Frequency of Requests for Pictures). This KLSP was 56 minutes.

Ok, back to the regularly scheduled survey... "

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - i have visual snow!! (only took 6 years to find out), November 8, 2007)

With the exception of 3 subjects (#43, #142 and jamiecheshire), users of the Yuku (formerly Ezboard) forum Visual snow or static from March 2006 on agreed that the community had much benefitted from the virtual focus group research project (see here), as envisaged by the authors of the above quoted WAKE UP CALL. IanKC (subject #92), forum administrator since 2005, summarized the positive impact of this research project on the internet community:

"Well, before we had this 'persistent migraine aura' diagnosis to go on everyone was pretty much throwing out a different idea every day. They still are, but to a much lesser degree. I think a lot of people are still skeptical about the diagnosis given the lack of successful treatment, so they still look elsewhere for answers. However, the board over the past year or so has definitely become more positive and hopeful due to Sofia Greene's study, as well as the study in Scotland. Before we could never get a doctor to take us seriously, now we have doctors seeking us out for information. I think the general mood of the board has shifted, as I said. People are much more hopeful, but people are also still frustrated. So while a lot has changed, I think until a successful universal treatment is found, a lot will stay the same."

(IanKC [subject #92], Yuku forum Visual snow or static – Discussion – Impact of Sofia Greene research project on internet community, November 20, 2007)

Approval of research project by users of the Yuku (formerly Ezboard) forum Visual snow or static

"I am glad ksomething is gathering information and working to collect the data..."

(ChodaKingandSprocket [subject #179], Ezboard forum Visual snow or static - Archive 4 - Overdiagnosis and overtreatment of Lyme disease, October 17, 2006)

"Then, finally, I think its cool that you, KP, are collecting data on all of this. I think it's a very cool way to collect data on something so rare."

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - Beneficial and harmful uses of internet forums, October 9, 2007)

"I know that ksomething, as a researcher, would'nt research something that didn't exist. But he doesn't suffer from it. So how does he know? And why is he bothering?"

(me07, Yuku forum Visual snow or static - General discussion - wave of scepticism, October 9, 2007)

"He needs material for his cool website of course... the fact he helps too is a bonus, and it's great help too!"

(alexxx [subject #435], Yuku forum Visual snow or static - General discussion - wave of scepticism, October 9, 2007)

"And please, of all things, don't bash Dr. Podoll for the work he is doing. My first neurologist told me I was crazy. To have a doctor actually take the time to listen and write out in detail every little description of this condition that each participant in the survey shares - wow, that's refreshing. He's doing this work because he is a doctor and a researcher. God forbid a doctor actually care about this."

(MelC1975, Yuku forum Visual snow or static - General discussion - wave of scepticism, October 9, 2007)

"I'd also like to add that Dr. Podoll has probably contributed thousands of dollars worth of his time to people on this forum, not asking for anything in return but information. You usually pay $100 to talk to a doctor for 5-10 minutes, Dr. Podoll takes the time to answer any question you have in great detail, all for free. I cannot express enough how grateful I am that he chose to study this condition in the first place, and continues to pursue it day after day."

(IanKC [subject #92], Yuku forum Visual snow or static - General discussion - wave of scepticism, October 9, 2007)

"Dr Podoll continues to revolutionize the way the Internet can be used to collect primary research data. Simply put... it's great stuff!!! VS or any other condition, he's really leveraging new tools in very creative ways to make an impact in moving medicine forward."

(viper123456 [subject #42], Yuku forum Visual snow or static - General discussion - wave of scepticism, October 10, 2007)

"Question... if this is a forum to JUST think about persistent migraine aura... why isn't it called that? It took me quite a while to figure out that this site is dedicated to that cause, and to support ksomething's research."

(winklemouse [subject #471], Yuku forum Visual snow or static - General discussion - New visual disturbance, December 11, 2007)

"A decent proportion of the people who come here likely have HPPD, so it's not only persistent migraine aura. Plus the forum pre-dates the research."

(SopuliSusie [subject #405], Yuku forum Visual snow or static - General discussion - New visual disturbance, December 11, 2007)

Between February 2005 and February 2006, a total of 57 subjects (32 females and 25 males) responded to Sofia's survey. The survey, which involves an online questionnaire, will be continued for another 2 years so that further submissions may be taken. As the primary concern of this research is the analysis of persisting visual disturbances, the responses from 17 subjects who reported visual disturbances lasting 10-120 minutes (nine subjects [#7, #9, #15, #19, #26, #27, #28, #31, #41]), 1-7 days (two subjects [#6, #17]), or who made no statement as regards the duration of the visual disturbances (six subjects [#8, #10, #11, #29, #40, #49]) were excluded from further assessment; leaving the questionnaires from 40 subjects (21 females and 19 males) reporting visual disturbances of over a week's duration for analysis. First results of Sofia's internet survey are reported on the webpages of this website.

Some sample biases in internet-based study on persisting visual disturbances

"Do you guys think we are in a minority of people who have this condition? I don't think so... I seriously feel that we are the unlucky few with bad doctors who have been unable to diagnose our conditions properly. If not, we would have so many more people with documented symptoms similar to ours. Also if a person had a proper diagnosis (let's say XYZ disease) then there's no reason why he would visit the 'visual snow' board - he would be getting treated for the XYZ disease and would be on the XYZ board. That explains why so few people are here on this board coz we are the few ones who don't know what the hell is going on!!!"

(sand500, Ezboard forum Visual snow and static – Archive – Frustrated, February 20, 2004)

"With surveys we have one big problem: no amount of mathematics will cover for the fact that we just aren't representative. We are per definition people who are very conscious of their condition, who worry about it and who feel better when talking about it on a internet discussion board. There is nothing wrong with this, but this means there is a narrow profile that roams these boards."

(tijmz [subject #83], Ezboard forum Visual snow and static – Archive – WAKE UP CALL, June 19, 2005)

International diagnostic classification systems ICHD-II from the International Headache Society

International diagnostic classification system DSM-IV from the American Psychiatric Association

International diagnostic classification system ICD-10 from the World Health Organization

Web-based tools (i.e. communication via internet forums or email) can be used to detect patients with persisting perception disorders (especially persistent aura without infarction and HPPD) according to operationalised diagnostic criteria (ICHD-II, DSM-IV, ICD-10), as has similarly been shown for other disorders where diagnosis primarily depends on the patient's self-experienced symptoms, e.g. major depressive disorder or subsyndromal depressive symptoms (Lin et al., 2007). This method of on-line diagnosis results in suspected diagnoses that have to be checked in each case by medical examination of the subject by his or her own doctors.

Suspected diagnosis??

"Suspected diagnosis?? That was another issue I had with that board. Seemed like there was a lot of diagnosing going on there. Not a good thing, IMO. Diagnosing via the Internet isn't a good idea, even for a doc."

(Teri Roberts, Headaches and Migraine Disease - Questions for Teri: Thread #12266 - visual snow?, November 6, 2006)

"That was kind of my thoughts, he did tell me to see a doc but, just the way he wrote it made it sound official. My doc who knows me well wouldn't even do much with me over the phone let alone on the net with someone he doesn't know. I thought his board was just them compiling info for research??"

(Metherell, Headaches and Migraine Disease - Questions for Teri: Thread #12266 - visual snow?, November 6, 2006)

Except for 3 users (subjects #142, #179 and jamiecheshire74) of the Yuku (formerly Ezboard) forum Visual snow or static who raised major criticisms against this method of making suspected diagnoses via internet, it was met with approval by the majority of users of the aforementioned forum and other participants in the survey. The following dialogue from one thread at the forum (which includes an allusion to Stewie Griffin's wistful ode to the squiggly line in his eye) illustrates the kind of acceptance (and its reason) with which the researcher's questions were commonly received. Alexxx: "If you don't ask you don't know." K: "As will be known by now, I like asking!" Alexxx: "Hehe, but we forgive you because you provide more answers than questions." (September 25, 2007)

Comments on internet diagnosis of persisting perception disorders by users of the Yuku (formerly Ezboard) forum Visual snow or static

"I hope your 'online' diagnosing of vulnerable and desperate people doesn't prevent them from getting to the root of any illness."

(prismvision [subject #142], Ezboard forum Visual snow or static - Archive 4 - Overdiagnosis and overtreatment of Lyme disease, October 14, 2006)

"I don't think this is the place to make online diagnosis based on pure conversation and speculation."

(prismvision [subject #142], Ezboard forum Visual snow or static - Archive 4 - Overdiagnosis and overtreatment of Lyme disease, October 14, 2006)

Arguing against prismvision's (subject's #142) criticism of "diagnosing VS victims ONLINE with migraine or HPPD with zero testing, zero bloodwork and zero face to face meetings", iuris (subject #192) noted: "Maybe... diagnosing migraine or HPPD doesn't require any actual testing or face to face meetings..."

(iuris [subject #192], Ezboard forum Visual snow or static - Archive 4 - Overdiagnosis and overtreatment of Lyme disease, October 15, 2006)

"Telling someone HPPD or migraine aura without infarction is a hit or miss thing in my opinion as the true reason has not yet been officially explained or understood for all of us yet some may fall into K's two rule diagnosis but I quite considering of other possibilities which I have already voiced."

(ChodaKingandSprocket [subject #179], Ezboard forum Visual snow or static - Archive 5 - irregular pulsating in temples, April 3, 2007)

Munchausen by internet subject jamiecheshire (see here) made the reproach of imposture to the senior author of this webpage, providing an example of transitivism. The attribution to another of that which is proper to us results from an illusion signalled by Wernicke (1900) under the name of transitivism.

"I mean come on, as for K being a doctor, well I don't know who he's trying to fool. It always makes me smile when he posts his 'online diagnosis' of people, he must be an amazing doctor to be able to do that!!!!"

(jamiecheshire74, Ezboard forum Visual snow or static - Discussion - A quick test to try out!!!, May 31, 2007)

"In K's case, he is basing his decision on painstaking work detailing medical histories and getting copies of reports from doctors and radiologists, and he is ADMITTING there are limitations to his conclusions. In my opinion, there is no need to actually see the patient since we have all been to a number of doctors who already looked at our eyes and saw nothing. The problem is not our eyes, and there would be nothing to gain in flying over to K's office and getting him to take another look. There is not one doctor I have seen in person who has taken such a detailed history, and even when offered they don't read it."

(Wendi Triplet Mom [subject #147], Ezboard forum Visual snow or static - Discussion - jamiecheshire74, June 8, 2007)

"Your Dad's being cautious about us interacting with you, and I don't blame him. But this particular website is probably a little more put together and self-regulating than most, thanks to Ksomething and IanKC, as well as the experience of the people who interact here. Am I gonna place my credentials out here for your Dad? No, because when I write on this website I am writing as just another person who is afflicted with VS and understands and also gets support. That's an important boundary, and I feel that if others of us are doctors or researchers or psychologists or officers or consultants or any other profession, we're bringing our knowledge and best judgment to help each other. I feel like it's good company, and I'd just rather get information from here."

(juliedeeinthesnow [subject #---], Yuku forum Visual snow or static - General discussion - Small update, March 12, 2008)

Of the 40 subjects, 5 (12,5 %) had a diagnosis of "persistent aura without infarction" according to ICHD-II criteria (mean MAS score 6,20, range 5-7), four (10,0 %) had a diagnosis of "Cannabis-Related Disorder Not Otherwise Specified" (DSM-IV 292.9, ICD-10 F12.19), four (10,0 %) had a diagnosis of "Hallucinogen Persisting Perception Disorder" (DSM-IV 292.89, ICD-10 F16.70), two (5,0 %) a diagnosis of SSRI-, i.e. "Other (or Unknown) Substance-Induced Psychotic Disorder, with Hallucinations" (DSM-IV 292.12, ICD-10 F19.52), and one had a diagnosis of suspected retinitis pigmentosa (ICD-10 H35.5). Overall, only 16 or 40,0 % of the subjects met the criteria of a specific medical diagnosis according to one of the established international classification systems; the remaining 24 or 60 % of subjects didn't get any specific diagnosis. However, these 24 subjects included 8 (20,0 %) fulfilling the criteria of "probable persistent aura without infarction" (mean MAS score 5,25, range 4-7) and 16 (40,0 %) matching the criteria of "possible persistent aura without infarction" (mean MAS score 1,81, range 0-3) as defined in the present study, the last mentioned category including 2 cases of "primary persistent visual disturbance (visual snow phenomenon)" (MAS score = 0).

Suspected diagnoses in participants in Sofia Greene's internet survey on persistent perception disorders
Diagnosis	Number of subjects
Definite persistent aura without infarction (MAS score ≥ 4 and criterion B.8)	5
Probable persistent aura without infarction (MAS score ≥ 4 without criterion B.8)	8
Possible persistent aura without infarction (MAS score < 4)	16
- Primary persistent visual disturbance (visual snow phenomenon) (MAS = 0)	2
Hallucinogen Persisting Perception Disorder [LSD, MDMA]	4
Cannabis-Related Disorder NOS	4
Other (or Unknown) Substance-Induced Psychotic Disorder, with Hallucinations [SSRI]	2
Retinitis pigmentosa	1

An internet-based approach of patient-researcher collaborative research

"K-

Thanks for being on this board. When I came down with VS last summer [2005] and joined this board there was very little other than mutual support and speculative theories. This is not to say that the board moderators were not doing a fantastic job. However, with your presence here [from March 2006 on] we have made huge strides in at least classifying and potentially better understanding this disease. It's fantastic to have a doctor who can at least relay information as to the current and best available medical knowledge so that we don't have to feel that we are crazy. It also helps when taking information to our local doctors which many people used to find incredibly frustrating because we were often dismissed. I hope your conversations with other doctors such as Goadsby, Abraham, etc. provide continued insight and that this forum can bring not only patients together but researchers together in the future. I believe you are a pioneer in the process of patient-researcher collaborative research. As such I believe you are forging amazing new ground not only in VS but in how research can be done in general with direct input from patients leveraging web-based tools. I think it is absolutely amazing that you've been able to gather information from nearly 200 patients from all around the world. The medical profession could learn something from your example in innovative research and clinical subject-researcher collaboration techniques.

Thanks again,
V"

(viper123456 [subject #42], Ezboard forum Visual snow or static – Discussion – Thanks Ksomething, November 26, 2006; additions in square brackets by Klaus Podoll)

"K, I wonder if you are planning to include on your new web pages some thoughts about the value of the Internet in conducting medical research for rare conditions, in which the nature of the condition allows the subjects to participate via the Internet. It seems that you have gotten a tremendous amount of information in a short period of time, and certainly your costs must be much lower compared to conventional studies. Of course, you may face criticism for certain aspects (for example, as you have mentioned you have not been able to examine many patients), but the volume of data and experiences you have been able to gather has to be quite large. Plus much of what you have is 'in the own words' of the patient which perhaps has some extra value. What are your thoughts?"

(MisterClean12 [subject #189], Ezboard forum Visual snow or static – Discussion - Ksomething - The Internet and Your Study, January 11, 2007)

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