• Anonymous
      March 12, 2012 at 8:03 pm

      Hi – I am fairly new to this illness (about 1 year) and forums. Being from the UK maybe things are different? My story is on a blog:

      What I have done is create a survey into GBS/CIDP to try and help others, by getting more information and would really appreciate people filling it in. I do not know if this is the right way to advertise it, but it is:

      Thanks Drew

    • March 13, 2012 at 1:28 pm


    • Anonymous
      March 13, 2012 at 1:49 pm

      Done also. Its quick and easy

    • Anonymous
      March 14, 2012 at 9:37 pm

      Ditto! I hope I win the “Round the World Cruise” on the 142′ 16.5 million dollar yacht you’re giving away for the winning entry!

      I really need a vacation.

    • Anonymous
      March 17, 2012 at 8:04 pm

      Thanks -to you all! I have just published the initial results (as I said I would after 100 completed surveys), they can be found @

      Please go and have a look. This doesn’t mean the survey is completed, it will run until March 2013, so if you haven’t filled it in please do.

    • Anonymous
      March 23, 2012 at 1:49 am


    • April 1, 2012 at 3:53 am


    • Anonymous
      April 1, 2012 at 10:33 am


    • Anonymous
      April 4, 2012 at 1:17 am

      I just finished your survey. I wish you luck in getting different orginizations interested in your data. I did a simple survey about 5 years ago and was blown off by all of them except the Mayo Clinic. I was told that surveys without hard medical evidence (meaning actual medical record data) are not accepted.

      Best regards.

    • April 4, 2012 at 11:34 am

      I just finished your survey. I wish you luck in getting different orginizations interested in your data. I did a simple survey about 5 years ago and was blown off by all of them except the Mayo Clinic. I was told that surveys without hard medical evidence (meaning actual medical record data) are not accepted.

      Best regards.
      Wonderful. Here we have an illness that is diagnosed almost entirely by observation of symptoms, except the patient’s observations don’t count.

    • Anonymous
      April 4, 2012 at 7:22 pm

      You got it!
      Here is how it works – Example: You get a flu shot (vaccination) today. Next week you don’t feel up to yourself; maybe you are tired and ache a little…spend 1-2 days in bed. Week 2 you have flu-like symptoms but don’t think there is really anything serious. Week 3 you notice weakness and fatigue. You get in to see the doctor and he ask, “what’s going on here?” You tell him you are weak and have had a few aches and pains – sorta like flu symptoms and just don’t feel up to yourself.

      Here is where it gets interesting – What do you think the doctor is going to LOG in your medical record? Since most GP’s have never seen a case of GBS or knows there is a link with flu shots and GBS, you doctor is going to examine you, maybe give you some medication, and wants to see you in 4 weeks…and notes in your record: “Tired, fatigue, and complains of some weakness, a few aches and pains.” He does not note the FACT that “this patient had a flu shot 3 weeks ago.”

      Now you’re in week 4: You can barely walk, extreme weakness – So you go to the Hospital ER. That doctor wants to know what’s going on…and if you have seen your own doctor. You say, “yes, I saw my GP last week – He didn’t think it was anything serious; I had some aches and was tired, weak and I have gotten worse since then. He wants to see me again in 3 weeks from now.” Well, what do you think this doctor is going to LOG in you medical chart? “Patient has seen his doctor last week; complains of being tired with weakness, aches with pain. Suggested that he call his GP and see a neurologist if he gets worse.”

      Now you are in week 5: If you are lucky, you go back to the ER or call your GP and DEMAND you see a neurologist. Meanwhile, there is still nothing in your medical LOG from your own GP or the ER about getting a flu shot. You’re lucky…ER doctor admits you to the Hospital and you are seen by a neurologist. AND, if you are really lucky the neurologist will do a spinal tap and get a diagnosis of GBS.

      Now all your MEDICAL RECORDS indicate you had the flu and that was the cause your GBS. AND, once it’s LOGGED in your records – You can tell the whole world that it all started with a flu shot…after you do some research of your own – However, your medical records are like CARVED IN STONE and they ARE NOT going to change. All your doctors and the neurologist will swear there is no connection.

      BUT YOU ARE THE ONE that has experienced this catastrophic event; do you think your opinion means anything compared with what is written in your medical records by Board Certified Doctors? I can give you the answer – NO!

      And that is how it works my friends.

      Regards to all.

    • Anonymous
      April 4, 2012 at 7:42 pm

      Hi Jethro,

      I personally did not contact GBS from a flu shot, but I think the scenario that you described has happened all too often. I visited the ER and was sent home, only to return eight days later after I started falling down. Fortunately, at that point I was diagnosed quickly…..not the case for many others. Always good to read your posts, enjoy your insight. Hope that you are doing well.

    • April 4, 2012 at 9:37 pm

      Excellent post Jethro!

    • GH
      April 4, 2012 at 10:28 pm

      Jethro, you haven’t provided any facts on what survey you did five years ago, how it was conducted, which organizations you tried to interest in it, or what their exact responses were, so you seem to be inviting readers here to draw a conclusion based on essentially no information at all.

      My conclusion is this: no valid conclusions of a general nature can be drawn from a study which has not been designed and conducted according to sound scientific method, so organizations which declined interest in it did so because they thought an amateur study to be a distraction of little or no value to their purpose. I don’t fault any organization for upholding standards of research.

      And by the way, speaking of scientific research, it is well established that the incidence of GBS is the same as between those who have been vaccinated for influenza and those who have not.

    • Anonymous
      April 5, 2012 at 5:44 pm

      As I have created my own survey (and in 3 weeks over 200 people have completed it – Thanks to them). I too have been told that it is un-validated, subjective and a waste of time! However I seriously beg to differ, for a couple of reasons:

      1) All evidence is subjective – The tests being done on me to see whether I am improving involve my consultant apply force in the opposite direction to me (and with larger muscles). He then writes down hi feelings about my ability. If I don’t press back quickly enough he will write down the wrong figure. Also it depends on his judgement between one time and the next (which are weeks ago). Additionally if you ask 1o people how much a punch hurts they will all say different amounts (even if you tired to punch them all as hard as each other). So any medical person asking patients how much it hurts etc. is always subjective to the patient.

      2) I am after getting more information out there so that people are diagnosed earlier or quicker so they do not go as far down as I did and can make more informed decisions. E.G. If I knew then what I know now I would not have elected to be treated by steroids, as I was given a straight 50/50 option (with no real mention to side-effects etc.) The real choice to me was, 7 more days in hospital, plus going every few weeks or go home and take pills – what would you choose if it is put like that? Now I know about the side effects (personally) and the 3 other pills I am on to counteract the steroids I would have chosen differently.

      So I am doing this for other peoples benefit and am determined to “Publish and be dammed!” (Arther Wellesley) – no matter what “experts” say – especially as I now count myself as one by experience!

    • GH
      April 5, 2012 at 6:18 pm

      “All evidence is subjective …” (from Drew, above)

      This is not true. The muscle strength tests used by neurologists and therapists are based on an objective scale. While instruments could be used to measure strength more precisely (and sometimes are), administering the test manually, without instruments, is sufficiently accurate for its purpose, particularly when administered repeatedly by the same person. Its purposes are to identify which nerves are affected, whether loss of strength is bilaterally symmetric or not, and whether muscles are progressively getting weaker or stronger. The last is the main characteristic which is monitored by neurologists after GBS or CIDP has been diagnosed, and simple, uninstrumented tests are sufficient. The lack of instrumentation does not make the test subjective, when conducted by a trained professional.

    • Anonymous
      April 5, 2012 at 7:14 pm

      Dear GH,

      The surver was actually in Dec 2003, post titled: What is the susceptible cause of your GBS? The choices of selection were: 1. Contaminated food (Campylobacter jejuni)….5% 2. Gastrointestinal infection….6% 3. Upper respiratory infection (other than the flu)….22% 4. Influenza (the flu)….11% 5. Flu shot….18% 6. Another vaccination….3% 7. Surgery….6% 8. Idiopathic (I have no idea)….27% 9. Pregnancy….2% These were shown on a multi-color bar graph with each cause and percentage – Total votes 100., and was open for approximately 5-6 weeks. The different organizations contacted by letter with a copy of the data multi-color graph were: GBSFI, The Cleveland Clinic, CDC, NIH, and Mayo Clinic…I think that’s it. The following is an example of (and the exact letter to CDC) the letters I sent:

      December 22, 2003

      Julie L. Gergerding, MD, MPH
      Director, CDC and Prevention Administrator
      1600 Clifton Road
      Atlanta, GA 30333

      RE: Guillain-Barre’ Syndrome statistical data

      Dear Dr. Gergerding,

      I am writing in regard to the current CDC statistical reports on the source causes of Guillain-Barre’ Syndrome. I have statistical data gathered from 100 patients that either now have, or had GBS. Futhermore, the data was from a Forum, and the patients are familiar with the disease and knowledgeable of source causes.

      Research usually comes from telephone interviews with patients; outcomes may have missed complaints, or information may have been disregarded due to the patient’s lack of undersstanding of the disease. Other data used to determine statistics is from VAERS, but it is known that a very low percentage (less than 5%) of the actual vaccine adverse effects gets reported. And for some reason, there are known adverse reactions that doctors fail to report and divert, or mask as other causes. Once patients truly understand the disease and source causes that may contribute, they can determine what probably caused their GBS.

      We as patients also understand that the true cause has not yet been determined, and the cause is still being researched. But we also understand source causes, even though not a perfect science, can be determined based on the patient’s clinical history and symptoms within the last 2-4 weeks with a reasonable amount of accuracy.

      The CDC shows Campylobacter jejuni bacterium as the leading cause of GBS, and as many as 30-40% of all GBS source causes. This may be true in China and Japan, but that does not appear to be so in the USA. There is no doubt that the leading cause of GBS is upper respiratory infections, and the cause may be as high as 30% of GBS cases. The poll taken at the Forum showed 33%, but only 5% of the causes from Cj.

      The CDC reports that only one in one million people that get flu shots get GBS from the vacccination, or about 60 people per year. However, in the poll completed by the 100 patients that have/had GBS at Guillain-Barre’ International web link Forum, there were 18% that voted their susceptible cause for GBS was from the flu shot. This was second only tio upper respiratory infections. Assuming the number of people that get GBS are 2/100,000, this would equal approximately 5,600 that would get GBS per year, and of those approximately 18% (or 1000 people) would get GBS from the flu shot. This is a big difference from the currently CDC reported 60. In fact, the poll number of 18% is more than Cj and gastrointestinal infections combined (5 and 6% respectfully), and flu shots also leads influenza which was 11%. This would suggest that chances are greater of getting GBS from the flu shot than from influenza. Something is wrong with the flu shot scenario; vaccination cause of GBS and influenza ratio.

      I do not think these poll numbers will shock the world. I do think they represent a large organization’s web Forum, with people that understand the disease. That is why this data is different than data collected by telephone from patients released from a hospital. Those patients really do not understand the complete stages of GBS…IVIg or plasmapheresis, or may not really know which treatment they received, if either. Most know only what their doctors have told them (if told at all), and many doctors have never treated a GBS patient before.

      I urge you, and strongly suggest that you review this poll data taken from 100 patients that either have, or had GBS. I think thhis data can be helpful in up-dating the CDC’s statistical data base that is referenced more than any other place for accurate numbers on diseases.

      The other 99 people and I believe the statistical data needs to be looked at and are trying to help you provide the world with better information. We are trying to help make a difference with information about our disease.

      Thank you for your time and attention.

      Yours sincerely,


      Incl: (1) copy of survey poll data

      This letter does not represent Guillain-Barre’ Foundation International-END

      P. S. Please excuse any typo errors…I could not copy and paste.

      Secondaly: In no way would I try to mislead or discourage my fellow brothers and sisters on this forum. In fact, I encourage each of you to write a letter to the editor of your local newspaper about GBS, and perhaps your story. I write letters to my editor nearly every May (GBS Awareness Month).

      Warmest regards.

    • Anonymous
      April 5, 2012 at 11:13 pm

      “….so you seem to be inviting readers here to draw a conclusion based on essentially no information at all….And by the way, speaking of scientific research, it is well established that the incidence of GBS is the same as between those who have been vaccinated for influenza and those who have not.” (from GH above, pg. 1)

      Dear GH,

      I have always spoken straight forward on this forum – That’s why I stay away now. But you seem to have no problem throwing your opinions around very loosly. If you would spend a little more time on research maybe you would know just a little more, or at least enough on “what not to post.” Such as:

      1. It is a known fact that the CDC basis there stats concerning flu shots (and other vaccinations) only from what is reported to VAERS (vaccine adverse events reporting system), and less than 5% of adverse events are reported; actually about 3%.
      2. The IOM, (Instituite of Medicine) which works outside of government regulators for unbiased medical facts, has concluded that a ‘casual relation exist between vaccinations and specific demyelinating disorders’; namely, acute inflammatory demyelinating polyradiculoneuropathy (AIDP) or GBS, and CIDP.

      Given the current state of scientific knowledge in the field, no responsible doctor, can state unequivocally that a particular vaccine caused a particular injury (or, for that matter, that it did not cause such an injury). Because, any doctor that is willing to make such a statement would be immediately attacked as stating more than science can actually prove. Demonstrating actual causation does not require certainty; rather, it requires a plausable scientific explanation supported by a creditable, reputable witness. And that is just the way the scientific “Flu Shot-Vaccination” world operates GH. Do a little more homework.

      Best regards.


    • Anonymous
      April 5, 2012 at 11:45 pm


      Thanks for your generous comments. Concerning the above post: My GBS DID start with a flu shot but unfortunately, I was misdiagnosed by my neurologist resulting in severe nerve axonal damages. I did NOT receive either treatment of IVIG or plasmapheresis. That has been over 15 years ago. My GBS progressed into CIDP and I am getting regular treatments of IVIG today. I also got another neurological disease while in the hospital, Transverse Myelitis (also not diagnosed)…and a blood staph infection (staphylococcous aureus) but the exact infection not known, pneumonia, internal bleeding and in a coma. I had a temperature of 107.9 and BP of 44/0 by Doppler (would not register by cuff) – Long story short, after an EEG (brain scan) showed no activity, my wife was told to make arrangements for a post-mortem so they would know what “killed me.” Thanks to her NOT making those arrangements, I am alive today. She called our pastor instead, and when he arrived my family circled my bed and prayed for a miracle. I was spared by the grace of God! What the doctors did not know, and I found through research, severe cases of GBS can cause the brain stem reflexes to become paralyzed causing a false positive EEG. Through a determined will, and lots of therapy – I can walk with a cane (sometimes with my arm “loop” crutches when my back is out of whack).

      All things considered, I am blessed to be able to do the things I can today; take care of myself, drive, and most things within reason…but still limited. The one thing I have learned over the last 15+ years is a strong spiritual and family love will heal, restore, and uplift life more than anything else on this Earth.

      Take care.


    • GH
      April 6, 2012 at 12:36 am


      You think I haven’t done my homework? I have posted links to abstracts or reports of four studies from Europe and North America on the subject of possible links between GBS and influenza vaccines, in addition to a link to the CDC statement on the matter, and I have read them all. These can be found in the most recent threads in the Vaccine forum. By comparison, you are merely pulling things out of thin air. Making statements such as “it is a known fact …” without linking to documentation to back it up is no evidence of having done any homework.

      Do all the studies you like, but it is not all surprising that the Centers for Disease Control and Prevention, which must have hundreds of medical researchers on its staff, would not be interested. If you want to get their attention, I suggest you submit your work to a medical journal for publication. That is the normal way to go about publishing medical research. Or just be satisfied that you have a web forum where you can publish without having to bother with such things as credentials and referees.

    • April 6, 2012 at 1:09 am

    • April 6, 2012 at 3:14 am

      You are doing good work and there is value. Don’t stop!

      From the “Experts”

      -Affects 1-2 per 100% (100% margin of error)
      -Recovery lasts 6-12 months….but as long as three years (vague)
      -your at greater risk if you are ” a young adult or older adult”-Mayo Clinnic (completely useless)
      -70% full recovery (no definition)
      -Poor prognostic factors over 40,preceding Diarrheal illness,vent support, poor upper limb strength

      Physical Therapy:

      -“Thats a 2
      -“That a 3,4 or 5”
      -“how would you rate your pain”…..completely subjective

      I don’t want to be negative about the medical profession because most of the folks who are dialed in to GBS are very knowlegable. But I have to say there is a lot of crap out there if the best you can give me is…”affects young adults and older adults”

      I’ll validate yourn survey if it help you or anyone else get more facts. It’s not a waste of time an I applaund your for your efforts.

      Good healing my friend.

    • Anonymous
      April 6, 2012 at 6:55 am

      Dear GH,

      For your information – VAERS and the CDC/FDA education – 101

      CDC and FDA are monitoring the safety of 2011-2012 flu vaccines through the Vaccine Adverse Event Reporting System (VAERS). VAERS is the nation’s frontline system to detect potential vaccine safety problems. VAERS receives reports from anyone who knows about or has experienced a health problem following flu vaccination. Although VAERS cannot determine if a flu vaccine caused a health problem (or adverse event), the system can detect patterns of potential concern that might require investigation.

      VAERS is a passive reporting system, meaning that reports about adverse events are not automatically collected, but require a report to be filed to VAERS. VAERS reports can be submitted voluntarily by anyone, including healthcare providers, patients, or family members. Reports vary in quality and completeness. They often lack details and sometimes can have information that contains errors. “Underreporting” is one of the main limitations of passive surveillance systems, including VAERS. The term, underreporting “refers to the fact that VAERS receives reports for only a small fraction of actual adverse events.”

      Enough said from me on this subject. You continue your good work, but I recommend you choose your comments more carefully in the future.

      Wishing you the best with warmest regards.


    • Anonymous
      April 6, 2012 at 7:14 am

      Hey guitarguy,

      I see you are really taking in this thread – Popcorn and watching in 3D…how can it get better than this? This forum needs a little competative change of thoughts every now and then; it’s good and healthy for our neurons to activate…what do you think?


    • Anonymous
      April 6, 2012 at 8:11 am

      I totally agree with kevin2010! It is exactly how/what was said to me and I thought – they really are being vague to the point of useless, why? (afraid of being sued?). I then was told there is loads of information out there (and there is) I spent weeks trawling the web and found so much, all of it contradictory and vague.

      I seriously do not intend/want to be negative about the medical profession as they do a great job, but to say this series of diseases has been nailed and all that is needed is available is untrue.

    • April 6, 2012 at 12:33 pm

      ‘I see you are really taking in this thread – Popcorn and watching in 3D…how can it get better than this? This forum needs a little competative change of thoughts every now and then; it’s good and healthy for our neurons to activate…what do you think?’
      Hi Jethro

      Hey, what can I say? I love a good debate. But seriously, I am glad to see you challenge the status quo. GH does know a lot and seems obedient to established knowledge. However, I feel that the true successes in the medicine have come because of challenges to gross intricacies. GBS info has a lot of unanswered questions and is not well studied.

      Of course there is much to be grateful from the care I received in hospital. But to have complete faith in the medical community-as far as GBS/CIDP is concerned-seems too great a leap. I have been presented with many assumptions. In my case, I can’t point to anything as a trigger for GBS, unless you want to count a cold sore. And since, there have been other conflicts.
      Anyway, I am glad there is some kind of debate happening, even if only on this thread. To me, there seems to be an indifference in the medical community and even within the GBS/CIDP community. That someone-anyone- is asking questions is to me a good thing. Drew’s work is actually the first survey I have seen since coming down with this nearly two years ago. Thanks to both of you for taking the time and care to do some digging.


    • Anonymous
      April 6, 2012 at 12:35 pm

      Jethro…… made a big difference in my recovery also…

      NGG……… the popcorn guy….maybe next time he’ll be playing a guitar:)P

    • Anonymous
      April 6, 2012 at 1:22 pm

      You make a really good point. It really depends where one looks for and/or gets their information. The following is a good example – GH made a post on the Vaccine forum, and I followed with another post with a CBS 60 Minutes video. According to her report (assuming GH is a lady), during the 1976 swine flu only 10 per million that got the swine flu shot got GBS as a result, or approximately 460 people. However, the CBS 60 Minutes video states there were 4,000 with neurological diseases, and 2/3 were GBS, or more than 2600. And in just about any web link concerning the 1976 swine flu, there is only 50 reported deaths, but 60 minutes reports 300? Personally, I have more trust in 60 minutes report than the CDC because, again, the CDC got their information from VAERS. See below:

      “Guillain-Barré Synrome and Vaccination: Usually Unrelated” by John D. Grabenstein

      This is an article, not a study report, which contains a good summary of the 1976 Swine Flu vaccination controversy.


      A Better Report: CBS 60 Minutes Video: Swine Flu 1976 Propaganda

      This video speaks for itself with all the “Hard Facts” – A Must see!


    • Anonymous
      April 6, 2012 at 4:11 pm

      Jethro could you please contact me i have a few questions for you about gbs awareness month. you can email me at or on facebook kitze shehan

    • Anonymous
      April 6, 2012 at 8:37 pm

      Just google “May GBS Awareness Month” and there is a lot of information. Concerning a letter to your local newspaper:

      Example Letter concerning May – Awareness Month GBS-CIDP

      The Evening Journal
      200 Maple Street
      Nowhere TN 40000

      RE: GBS-CIDP Awareness Month – May

      Dear Editor:

      May is National GBS-CIDP Awareness Month. Even though it is rare, (2-4 people in 100,000 diagnosed per year), there are a number of patients in our community that have been diagnosed with GBS/CIDP – Also known as Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy. The syndrome is named after the French physicians Georges Guillain and Jean Barré, who described it in 1916. Because it is French, it is pronounced ghee-yan bah-ray.

      GBS/CIDP are an inflammation of the peripheral nerves (all nerves other than the spinal cord and brain which is the central nervous system) and in most GBS cases, is followed by a demyelinating attack on the coating that protects the nerves called the myelin sheath. About 70% of the people that get GBS recover with some residual effects if early treatment of either IVIG (known as intravenous immunoglobulin) or plasmapheresis (known as a plasma exchange) is given to slow or stop the attack on the myelin sheath, preventing additional damage to the nerves.

      Everyone is familiar with an electrical wire. The plastic coating that protects the copper wire is much like the myelin coating that protects the nerves – The copper wire is much like the nerve. If the plastic coating is stripped away leaving the copper wire exposed without insulation, there will be short circuits. This happens when the myelin is stripped from the nerves…electrical impulse signals from the brain to the trunk and limbs do not receive signals, and parts of the body can not move, leaving the person paralyzed because there is no insulation for electrical conduction in the communication path, and all the electrical impulses short circuit. The sensory glands and organs are also affected and a feeling of tingling, numbness and pain also occur with the loss of the ability to actually “feel” textures, or determine sizes such as the difference between a quarter and a penny.

      Guillain-Barre syndrome is Today’s number one Worldwide cause of acute flaccid paralysis. The problem is that General Practitioners, Emergency Room Doctors, and some Neurologist do not recognize the symptoms of GBS. A quick diagnosis with fast treatment of either IVIG or plasmapheresis will determine the extent of damage to a patient’s myelin sheath and their recovery time…it could mean the difference between months or years, and the amount of residual damage to the patient. The secret is a better education of the symptoms of this devastating and catastrophic disease to all doctors so a quick diagnosis can be made and treatment can be started as quickly as possible to prevent long term residual damage.

      This disorder can develop in any person at any age. Every case is different and can be difficult to diagnose. Just imagine waking up one morning unable to walk or stand. This can progress to paralysis of the breathing muscles, making it impossible to breath on your own, then total paralysis unable to communicate. Usually months of hospital care is necessary, all the time not knowing if and when you will recover. Life as you knew it is gone – You are “locked out” of the life you had.

      The difference between GBS and CIDP – GBS is an acute attach, meaning it comes on suddenly, within a few days or 1-2 weeks, and in most cases patients will recover with residual affects after a period of several months of therapy. CIDP is a chronic type of GBS, meaning it comes on over a period of time, usually weeks or months, and in many cases patients do not recover, and will go through years of treatments – some with steroids, others with IVIG, and some with immune suppressants.

      With over 40,000 former patients, Support and Information is available from the GBS-CIDP Foundation International: Address: GBS-CIDP International Office, The Holly Building, 104 1/2 Forrest Avenue, Narberth PA 19072 ( or you can contact by Phone (610) 667-0131.

      Jethro Smith
      100 Anywhere Street
      Sometown, PA 00000

    • April 6, 2012 at 8:51 pm

      I hate that I can’t edit! In my previous post, I meant to say that medicine needs to be challenged and that the road to successfully understanding complex illnesses accepts this. There are many instances where the medical community has adhered to nonsense because it was accepted and reviewed by experts.

    • Anonymous
      April 6, 2012 at 9:31 pm

      Here, Here!!

      What is an expert anyway? Surely we are as much experts in this field as the docs/consultants as we know how it affects us! Also the way the consultants in the UK (I do use plural for I have seen more than two) discuss this, is they really don’t know what treatments works for which patients so they really state it is a toss up between three or four different ones (starting with IVIG or Steroids). I can’t comment for the US. This is why it annoys me greatly when people say that everything is known about this disease (or set of diseases) – it certainly ain’t from where I sit – or stand when I can 🙂

    • Anonymous
      April 7, 2012 at 12:17 am

      About time there is some lively debates on this forum….just like the old times…….

    • Anonymous
      April 7, 2012 at 12:30 am


      You have one shot to edit your post, but you MUST do it before you log out!! Up above your photo is the date and time of your post…on the right side, directly across you will see in very light print edit and the post #. Click on edit and you can make changes – But you’ve got to do it before you leave the thread!! If you leave and come back, the edit will be gone. So, after you make a post read it carefully before you leave.

      Take care and enjoy your popcorn.


    • Anonymous
      April 21, 2012 at 10:55 pm

      Would it be possible for Drew to show and update the results of your survey in real-time, i.e. as people fill in the survey, with the number of current participants included in the summary? It would also be great to see some differentiation of results between GBS and CIDP in the summary if that were possible too?

    • Anonymous
      April 22, 2012 at 4:45 pm

      Dear alk,

      Drew’s Survey is very good and complete. His Survey is very complex and his data charts are outstanding and support his Survey in elements of accuracy. There will be Organizations that will take interest – and to GH’s note on pg. 2, she makes an excellent suggestion of presenting the data to a Medical Journal for publication – I have changed my mind on Drew’s Survey with all his reports and expressive data – I encourage him to continue his outstanding work, and if he thinks I can be of any help, just ask.

      Best regards.


    • Anonymous
      April 22, 2012 at 7:00 pm

      Jethro, I don’t want to detract from all Drew’s hard work in setting up this survey. It is very refreshing to see someone taking a proactive step to find information which is not always readily available in other places on the internet but although complex, it is not complete. Some people will always want to see the data represented in other ways or formats and I, for one, would appreciate it if Drew would take on board other suggestions before thinking of submission for publication 🙂

    • Anonymous
      April 26, 2012 at 7:49 pm

      Sorry, been away for a few days – what other suggestions do you recommend I take up?

      I have now received interest in my survey from the UK GBSSG and am talking to their chief medical officer about some amendments, but they will publicise it if it is OK. Went to their Annual Meeting and learnt load about how the disease is contracted, trying to get slides and will put in my blog