Finding a good practitioner is hard – and so is avoiding a bad one. We’re mostly running blind as we go from one practitioner to the other, hoping that one of them is going to know something about chronic fatigue syndrome and/or fibromyalgia.
Please help us create a ME/CFS/FM practitioner review program…
We want to cut out the guesswork, save you precious time and money and give you the best chance to improve your health.
Beta Testing
be·ta test
- test by customers: a test of a product, especially computer software, by giving it to customers to try out, before the final version is ready
A beta version of a chronic fatigue syndrome and fibromyalgia practitioner review program produced by Health Rising is ready for early testing.
We’re looking for people to review and comment on the project to help us produce the best program possible. No experience is required (and brain-fogged patients are particularly welcome :)).
We would like reviewers to enter doctors, review them, post the review, check to see if the review worked, etc.
If you’re interested in helping us work the chinks out, and create the best possible ME/CFS/FM practitioner review program possible you can find the program here.
- One note – we’re planning to use Dr. Bell’s Disability Scale instead of the functional assessment currently incorporated into the program. If you’re having trouble with the scale in the program now please just rate yourself in functionality from 1-10….
- Another – we’ve discovered that only the US section is working right now….
Please leave your comments in the blog.
Thanks for your help.
I’m trying to do it but can’t get past the map and it asking me to input my doctor’s name and location. I’ve clicked my province (Ontario, Canada) many times and nothing is happening.
Thanks Angela – Two questions
I don’t think we made it as clear we could have that you have to sign in first to rate a doctor. In retrospect maybe we should have a bar in the middle of the page that says sign-in to rate your practitioner. Did you sign in first?
If you did – does a ‘Click here to add a doctor’ bar show up in the map?
I did sign in with my yahoo ID. The click to add a doctor bar shows up and only gives me the map with nothing else.
I see the problem! If you click on Ontario and then Click here to add – the map shows up – but you can’t add anything…Ha!
The same thing happens with the UK, Australia, NZ and Spain…actually every country but the US. It works in the US…
In fact you can add a practitioner even if you just click add a practitioner in the whole country section. I just never checked the other countries.
Thanks for finding a bug 🙂
I can see one issue; the cost rating is too high….you have to have spectactularly high costs to get all 5 dollar signs lit up…I’ll have to adjust down the amounts associated with each cost level.
The satisfaction rating may need to be adjusted. I gave Dr. Cheney a three out of ten; that translated into a single star out of five….that’s a bit too low.
The map also came up very slowly one time – after I went through Dr. Cheney’s rating and clicked finish. It took about 20 seconds to come up; it came up quickly other times, though.
On the doctors review page we should have patients information below the doctors information….its amazing how you miss these things 🙂
I tried to go into the UK CFS page but I couldn’t get past the sign in – facebook nor wordpress buttons did a thing 🙁
Thanks Tish – you clicked on the buttons and they did not take you to a Facebook page – is that right? or did you get to the Facebook page and it just didn’t work?
I clicked both the facebook & wordpress buttons and nothing happened at all – stayed on the same page.
WordPress button is now implemented.
I filled out the forms. The doctor I recommended, Dr. Rebecca Ware is a PCP. NOT an ME/CFS specialist. She understands that this disease is a debilitating physical illness. She has been compassionate and affirming in her care of me. What I felt I stated in the questions asked in the review, was not quite what appeared in the final summary. A couple things were off: Average Length of Visit showed as 45 minutes, this was the length of my first initial visit with her, but subsequent visits average about 15 minutes. Satisfaction: Ho-hum. Yes, only because she is not an ME/CFS specialist… She is NOT a ho-hum doctor in other aspects of my care not related to ME/CFS. The comments I made on the questionnaire made clear that she is not an ME/CFS expert, but that she is a very caring basic care physician who believes in this illness and will treat co-morbid conditions and take this disease seriously. NONE of that came out in the final analysis that will be seen when one clicks on Ohio and see’s her name and profile. I found the final summary very confusing and I’m the one who filled out the form. Some changes need to be made in the translation of the questionnaires answers to the final summary. Plus the comments made on the questionnaire should show in the final summary as well.
Hope this works! Lord knows we are all driving in the dark when it comes to finding compassionate physicians who believe this disease is real and that it can be very debilitating, let alone finding someone who actually specializes in the treatment of ME/CFS. We need to know how to find these doctors!
Thanks Nina – we certainly want to capture caring physicians even if they’re not ME/CFS specialists (since there are so few of those).
Your comments did not get published….those are vital – particularly in this case – and we need to clear that up..Thanks for letting us know….
It sounds like the length of the initial visit did not get published – we’ll have to check on that….
We need to move the patient information down to the bottom, get the comments working and get a more user friendly design for that page.
Thanks for all the info 🙂
I love that you are doing this! It is so needed. Please know I appreciate you for taking this on!
Nita
Why do I need to give permission to my Yahoo account information? Was willing to help out until I saw this.
Thanks for letting us know this is an area of concern for you, Sharon.
It’s actually easier to devise a sign-in system using Yahoo, Google, Facebook than to create one ourselves – that was the reason for doing it that way at the outset…
I take it you would rather just sign in into the website; you’re the second person to have that concern; thanks for letting us know….:)
From this link, perhaps you can see what I see … which, after signing in, is pretty much nothing. 🙁 http://javagrond.appspot.com/#mapOf_usa_cfs
No, wait, I just increased the screen size from 100% to 150%, and could get the info about the two doctors in the US for CFS. How about making that ME/CFS?
Spacing across the top is a problem, even with my 17″ screen set at 150%. Maybe too much info there? Also, it would be helpful, at least long term, to list by state, but perhaps that could be solved by using pins in the map with links to the names of the practitioner. I know you’re already working on such as that …
Unfortunately I don’t have a practitioner to recommend … while I’ve seen some pretty good ones in the past, I do not know if they have grown along with newer research and alternative/complementary modalities, which I believe to be essential … diet being an example. The last time I saw a specialist was in 2005, but he now specializes in cancer.
I’ve learned a lot from Functional Medicine practitioners through webinars, newsletters, etc., though I have not been to see one. More and more, I think that we have to take charge of our own healing. Perhaps there could be, at a later date, space for knowledgeable practitioners who give seminars/webinars/workshops on issues like MTHFR, gluten, diet, detoxification, supplements, yoga, meditation, clean environment, energy medicine. They are often not MD’s, but chiropractors or nutritionists, and they sometimes do individual work over the phone or skype. The degree to which mainstream medicine frowns upon these methodologies has improved over the years, but additions such as these could prove problematic for the site, disease credibility being so hard to come by as is.
Not much site help, but cheering you on! 🙂
Thanks for cheering us on 🙂
That’s a yes on ME/CFS – thanks for point that out.
I’m not sure why the spacing showed up that way….Thanks for letting us know…
Good point on the state by state… If you click on a state you can find the practitioners in it but it’s going to get pretty crowded on the countries front page. ….Thanks for the idea
We should probably have an approximate date seen – so that people can know when these practitioners were seen – given that their practices change over time – good point…
I like the other sources of information idea alot…:)
Absolutely need a screenshot to follow up on the spacing issues.
Consider installing http://awesomescreenshot.com/
Italy not marked, why? Thank you for the answer.
Someone just noted that Germany is not in there either :). My hope is that we will expand to all of Europe and elsewhere after the program is stable….I know Italy has some good practitioners 🙂
I took a look at the site, but stopped at the sign in page. There are several options, but none to simply create a new account without using FB, WP, Google or Yahoo. Since many viewers may not be comfortable with using an existing authentication service (myself included) do you plan to offer a site based login service?
I found the initial page a bit confusing. I was looking where to go to enter in a doctor. It would be easy to add some text and a button saying something to the effect: To add a new review, click here. Place that just above the listing as the listing is sure to grow in length.
I will spend more time with the app and offer additional feedback.
Thanks Ian – you’re the third person to mention this – it’s definitely a concern and something we will look at.
Good idea – To add a new review, click here.
Thanks…
Hi Cort,
This sounds like a great tool to have for doctor visits. I’m interested in completing the form to reflect both my U.S. & Germany doctors, but I don’t see it listed. Can you please add Germany to the survey?
Thank you!
I’ll talk with the programmer, but I hope we can get the rest of Europe (and elsewhere) on there. (My guess is that’s not a big deal)
I tried, but at the end it didn’t take because one line of the Overall Satisfaction was missing, so I couldn’t input in it. The one on the left. Let me know when it’s fixed so I can do it again. Thanks.
I think that might be a problem because of the way we created the Form.
It looks like a line is missing because the Overall Satisfaction rating is underneath the lines with the 20 choices, but there’s actually only 10 choices in the Overall Satisfaction rating.
To fix this we’ll move the overall satisfaction rating down further so that it’s clear that it’s by itself.
Did I get the problem right?
That was an issue for me too. I think that even just making a bigger space between the first appointment and last appointment boxes would make it more clear, and maybe move the overall satisfaction bar to be under the first appt. box so it’s closer. Easy for me to say! 🙂
Could you give as a screenshot? Might help us fix it.
http://awesomescreenshot.com/ might help doing the shot.
I am an idiot. I mean, um, so what if we have CFIDS/CFS/ME/WT-Fever while simultaneously having Fibromyalgia ? Do I go to both CFS and Fibro links? ( The labels confuse me.)
Good question :)…..I can see the problem. If you think your doctor is more of an ME/CFS doctor then use that section, if they’re more of an FM doctor use that one.
I don’t know that there’s a really good solution to this one..
Hi, Cort,
My brain’s not working very well today, so I’ll try again soon. In the meantime, I also vote for adding ME in front of CFS everywhere it appears on the site.
The only other thing I can offer is that I’d like to see all scales and both axes of charts clearly labeled (without having to mouse over the answers). For example, in the “How Patients Said They Did Under the Care of This Practitioner” section, the demarcation line between gaining and losing ground isn’t labeled as such. Also on all rating scales, it would be helpful to me to have 0 labeled as “Low” and 10 labeled as “High.” This may be obvious to most people, but if the labeling is done consistently, it may remove some confusion for people who are struggling to make sense of a fair amount of data.
Thank you for doing this important work for all of us. I plan to revisit the site again as soon as my brain clicks back in.
Many thanks,
Sarah
Thanks Sarah,
We’re going to remake the pie charts into bar graphs – that will make them smaller and allow us to differentiate them better.
Agreed on labeling everything very clearly- thanks 🙂
Wish I had a practitioner I could rate! 🙁
Yeah, me, too. Only a more monied few have access to knowledgeable doctors.
We want ANY doctors that you’ve consulted with regards to ME/CFS – your primary care doctor, your acupuncturist – anyone that’s tried to treat your conditions.
If I could remember their names it was so long ago I, for instance, saw an allergist, an acupuncturist, a rolfer (yes, a rolfer!), several MD’s, a psychologist……and probably some others…
Only the Facebook button worked for me – and there is no way in the entire world I would allow Facebook to give you my friends list; you should not be asking for it.
The WordPress one – which I clicked many times, even after reloading the page – didn’t do a thing.
I am now too tired to try again.
I comment on here regularly – why isn’t that good enough?
Alicia
lol Alicia. You and I are on the same page as far as giving all our so-called personal info to the entire universe, Some shrug it off. I can’t however. Life before the internet was complicated and dangerous enough out here in 3 D. Not ‘paranoia’ when the threat is real. I call protecting info, family and friends ‘common sense’. And yes, I do get tired of fighting the current, always swimming upstream. …sighs…
You don’t need any personal information published to have a Yahoo / Google account.
Unfortunately I don’t know how not to ask for friends, cf. http://stackoverflow.com/a/14077513/257568
Thanks Alicia – we got the message from you and others. We, by the way, don’t get any of that information – Facebook gets it all.
We implemented the social media logins because developing a sign-on section ourselves took alot more time but they obviously aren’t going to work for alot of people – so we’re looking at other options.
This is how we learn 🙂
Hi Cort,
I tried to gain access to this again, and was partially successful. The wordpress button still did not work, but the facebook login did, but only so far… a notification came up asking me to name a doctor and give a location, but that then disappeared and there was nowhere to go!
I’ll check back in a couple of days and see how it’s going. Good luck!
Tisha
Whoops – Thanks for trying again 🙂
I don’t do any of those data-mining sites like facebook so I won’t have access to this tool.
Thanks for letting us know Iquitos – you’re not alone…
K, so I just noticed that the docs seem to be listed by ratings (number of stars). Why not put the highest rated first instead of last?
Agreed, it would be better to have highest rated first. That should be an easy fix.
Cort,
I just filled it in for Dr Cheny, who I saw when he was in Charlotte.
All seemed fine until the very end, when I did not notice the highest rating on Overall Satisfaction was actually N/A.
Seems like that button should be dropped for overall, as I could not exit the survey until I moved to a real rating. If N/A is Not Acceptable fot the survey, than do not allow it with a button there.
I know this gets simplified, but my visits with Dr. Cheney were covered by my employer’s health insurance program. I paid on my credit card, then we submitted for coverage, and got the maximum for an out of area doctor in the plan at the time. Simply saying that his office did not file the insurance implies his services are never covered, which was not true. It is true that he does not take Medicare, for a complicated set of reasons, or was true when I saw him, at the end of the last century. Well not so complicated — he charges for phone consults, because those are just like a meeting in person in terms of his total concentration on me, the patient of the moment. Medicare relies on the model for local doctors and does not allow charging for a phone consult or phone call of any type.
Honestly, I don’t think anybody accepts insurance anymore; ie takes the insurance forms and submits them to the insurance company for you. I think everybody does what Dr. Cheney does….which means we should take that question out.
I’m not sure why we have N/A – not/available – in there…We’ll get rid of it. Thanks for letting me know..
I am unable to sign in. The site will not respond to my choice of sign in with “Word Press”. I have used Word Press for logging into other sites. I do not want to use my Facebook or Google account. Perhaps the error is due to the fact that I am using an iPad. (But, I am also using it now). I am so looking forward to the information you will be sharing. This makes so much sense and is sorely needed 🙂 Thank you.
Read more: Chronic Fatigue Syndrome and Fibromyalgia Practitioner Review Program Requests Beta Testers http://www.cortjohnson.org/blog/2013/11/08/chronic-fatigue-syndrome-fibromyalgia-practitioner-review-program-requests-testers/
WordPress sign in should work now.
I really want to sign-up for this but I don’t feel comfortable signing through Facebook and having all my friends list, etc., having access to. Is there another way we can sign on, but through your page instead of FB or Google? I have a great internist that is compassionate and really tries to help me and I’d like to recommend her.