Student Project: Medical Questionnaire, Volunteers are STILL Needed

Hi All,

Sorry I haven't replied to any of your messages any earlier.

The study seems to be getting taken out of context. As a CFS sufferer myself, I know full well how your condition can be ignored and thrown to the side, however, my study is in conjuction with NO universities, government bodies, physicians or researchers. It forms part of my course, known as the "Access to Medicine" course at the college of West Anglia in Kings Lynn, Norfolk.

All the data collected will be analysed by myself and the results presented within the College. This is as far as this data goes.

The Questionnaire is designed by myself, my aims being to determine how different patients view their condition, how they feel it is treated etc. It is entirely PATIENT based with no outside influence from practitioners etc.

If anyone has any further questions, or would like to participate, please don't hesitate to contact me.

Many Kind Regards

Linzi

I did an Access course, mine was Access to Social Sciences (then changed to Access to Social Professions) and they are superb courses for MEers. I also had to do a questionnaire as part of my final unit (mine was on attitudes towards 'Britishness' and what it meant, I never knew how hard it was to do a questionnaire! Evil things.) so I think I know why your doing this and that it's just to pass you course, yes? Lol, I don't think my tutor even looked at mine, she just passed me and I was off to the UEA, huzzah

I'll have a bash at your questionnaire, I'll PM you, Katie

What does it all mean?

Hi Linzi,

I do wish you luck and I hope you received my "completed" questionnaire. I know that it was replete with comments and that there were a number of questions that I did not answer. I hope that all those comments weren't to heavy handed. I do appreciate that the comments will make the analysis difficult. I'm writing this here because I wanted everyone to know that I do wish you the best of luck and that I appreciate your interest in CFS. I don't question your motives. If I did, I wouldn't have returned a questionnaire. That does not mean that I am not leery of how some may interpret your data.

I do wish you luck with school and would plead with you to stay within your limits. I got CFS in 1994. For years I was at about a 40-50 on the Bell scale. I got some specific treatment that really helped me for a time. I was rolling at about an 80. So, what does one do when one feels well and has his research dreams dashed and who really likes to engage? - goes to law school of course. I lasted 10 weeks! Four years later I'm at a 20 on Bell's scale with some really debilitating and life threatening complications.

All of that said, as someone who has written and analyzed more surveys and questionnaires that I can count and who has analyzed more data than anyone person could ever use in a life time, I have a question and a comment that I hope will be constructive. Did you pretest this questionnaire with a group of CFS patients? Patients who didn't know you and who might have read the questions with a bit more of a skeptical eye than your associates. The comment is that regardless of what you are able to glean from your survey, I think that you are getting a lot great 'data' on how CFS patients who have had decades of mistreatment feel abused (and can be really reticent to get hurt one more time). This reticence is hard earned and very understandable. I know for myself, I have been trying to learn how to be a better patient. I just wrote to another participant on these boards that for me that has meant walking away - without anger - from a lot of doctors who can't help (there are a lot of ways they let you know they can't help - some honest and compassionate, some ways are mean spirited, self-righteous and ugly). The without anger part has been the biggest challenge.

Maybe one important lesson here is how abused so many CFS patients feel and how - even without attributing malice - so much of what the medical field has done has been nothing short of cruel.

Best of luck with you project and PLEASE, take care of yourself.

Shane

wish I could

Hi Linzi,

I am declining to do your survey ONLY because I need to stay focused on my own studies and I GET SO VERY EASILY DISTRACTED! I'm very curious about your survey and would love to help you with it, but I need to NOT do it.

I wish you good participation and meaningful responses. And may you enjoy your educational pursuits.

Gracenote

Hi Linzi,

I too wish you all the very best in your studies! I also echo Shane's caution to stay within your envelope. Much is possible within that envelope!

I am one who enjoyed a remission of symptom and a return to about 80% functioning for many years because someone insisted early on that I heed my limits. Left to my own devices, however, I ignored the envelope :ashamed: and relapsed :worried: But, no regrets, what's the point.

Please keep us apprised of your progress if you see fit. It's very exciting and, as you well know, we really need medical practitioners who know the truth.

Please take good care,
Koan

Hi All,

Just been reading the last couple of pages, drama drama drama ! If anyone wants to point out my bad grammar mistakes it would be much appreciated.
Hope you are all well anyway.
Thanks to everyone who has taken part in the study so far. From what I can see in the posts, and from other forum posts as well, there is a lot of doubt over the intentions of this study.
I can assure everyone who reads this that I am not out to "catch you out." Taking part involves answering a questionnaire which is sent to your email address, you can complete it in your own time and then post it back. Thats it. It may take up to 10 minuites at the most.

As for people questioning my CFS, I can understand where you may be coming from. From the responses to the questionnaires so far, I can see the varying range of CFS. I was 11 when I was diagnosed, when I 17 my symptoms eased and by 19 they had disappeared. I'm now 21 and perfectly healthy. My CFS never involved Chronic Fatigue, just muscle weakness, bone and joint pain, loss of concentration etc etc. I was lucky enough to be able to get out of bed every day and learnt to deal with the pain.

I'm very much aware of how messed up the medical system is when it comes to diagnosing and treating CFS. I spent from aged 9 to 11 begging the doctor to find out why I was in pain, it took 7 hospital referrals and more scans and X rays than I care to remember to get me a diagnosis. From then on I was referred from one doctor the next, from physiotherapists to bone specialists, EVERYWHERE. I've been diagnosed and undiagnosed and diagnosed again, it simply depends on the doctor I get.

Please don't let my "recovery" make my intentions for this study doubtful.

This study does form part of my course, and without it I can not pass. I could have choose to see how.... "Alcohol affects concentration" for example, but I chose to do something I feel strongly about and feel it is necessary for patients to have their say into how effective they find their treatments and their views on CFS.

I hope and Pray that my CFS never comes back, although I am aware that stress can cause me to have painful flare ups. I know for many of you it may seem that there is no end to this condition, but honeslty, don't give up. If I can get better, ANYONE can.

Please, if any one has any other questions, give me a shout.

Linzi.

That comment is exactly why I will not participate in the questionnaire. If this disease were that simple, we would all be well by now. That is like telling a end stage pancreatic cancer patient that you had a malignant mole removed when you were a teen, are now cancer free and that if you can do it so can they.

That is patently absurd. And faulty logic.

Hello Linzi,

Thank you for sharing your story with us. However, although your above quote was well intentioned, sadly it is not true for the majority who develop the illness when over the age of 18.Statistics suggest that children normally do recover after an average of four and a half years. Not all, of course, but I understand that the majority do. I spoke with a pediatrician about this and he said that it is too soon to know whether we should refer to 'recovery' in children or just 'remission'. Time will tell. It has been hypothesised that recovery/remission in youngsters is related to the production of growth hormone. You were fortunate not to have been initially affected after your teens.

I wish you success with your studies.

Best wishes,

Countrygirl.

Bluebird,

There is nothing wrong with my logic and way of thinking. I won't give up hope that there WILL be a cure one day. I think your example of a Pancreatic Cancer Patient and someone with a malignant mole is an absurd comparison to CFS. This disease is absolutely awful, but comparing it to cancer patients is taking a step too far.

Making light of my CFS is something I don't feel you have the right to do, just because I have managed to get better does not put me in a Naive position on this subject. I may or may not have suffered to the same degree as you, neither of us will ever know that, so you therefore have no right to judge my logic.

I am not forcing anyone to take part in this study, simply asking anyone that does to let me know, therefore, I do not think my personal reasons are an "excuse" for you to tell me I am absurd.

However, I respect your choice not to take part in this particular study, and wish you every luck in the future.

Hi Country Girl,

I've heard that before, however, I have come across a few adults who have "recovered" after getting this condition in their later years. Although, I can appreciate that this is a minority rather than a majority. There's evidence and contradiction from all angles, and it is impossible to say that EVERYONE will eventually recover, but a bit of positivity never hurt anyone.

I can not imagine how difficult it must be having your life changed by this condition, especially if I picture myself in 10years time, however, I am positive that with the research that is getting put into this condition (although not enough in my opinion..but that's another debate) that a cure or at least an effective form of treatment will be found for ALL age groups. My comment was meant to send out a bit of positivity. And if there is teens reading this forum, then I hope they will take some encouragement out of your comment regarding your discussions with the pediatrician.

Linzi

I have never been diagnosed with CFS, only ME. I assume from reading this that you're differentiating? You might want to discount my contribution as it is not CFS but ME. I hope I haven't wasted your time but I assumed you were usuing CFS and ME interchangably as many do in the UK.

Hi Katie,

The study is to include ME, CFS and Fibromyalgia patients

This thread has turned into a joke. I began reading this and only registered to add my reply.

I would like to first make it clear that I am NOT an ME or CFS sufferer, so there is no way I can understand exactly what those of you with this condition are going through. However, as a junior doctor who - as part of my job - keeps up to date with current medical research, I must say I have not come across any new "strand" of CFS or ME that alters people's personalities to the extent that they become abrasive, rude, and completely impolite. Nor have I, in all my years as a medical student and my career as a doctor, ever encountered a case of CFS or ME that could be placed alongside any form of cancer. Such a comparison is grossly incorrect.

Linzi031088, as she has already told us, is not a doctor. Perhaps she has not become as jaded as some of us become with life experience and age. We might assume this is why she is so optimistic, and perhaps even a little nave. Is this a good enough reason to shower her with such hostility? I very much doubt so.

I wish you all the best on your journey through life.

Yours faithfully,

Miss Fabulous

Ps: Should you find any spelling “mistakes” that cause your eyes outrageous distress, please recognise that I am British, therefore I use what is commonly known as “The Queen’s English”.

Then it is fine to use my answers. Please let us know if you pass your access course, it was a happy, happy day when I passed mine

Hi Countrygirl.

Part of the questionnaire asks which term you use for your condition allowing me to seperate participants. There is a booklet by Dr McKluskey from the Royal Hospitals in Northern Ireland, he is a specialist in this area, and terms the condition M.E and C.F.S under the same condition. It's complicated and confusing.....

Hi Miss Fabulous. No need to counter perceived rudeness with rudeness of your own. I agree that people may have been unduly hard on linzi (sorry about that, linzi, but people here have been through a lot, as you know) but I disagree with Miss Fabulous on this one:

Perhaps in "all your years" as a junior doctor you haven't yet seen everything there is to see. There are people on this forum who have had both ME/CFS and cancer, and report that ME/CFS is worse.

Hi Linzi,

Thanks for the information about Dr McKluskey. I don't know anything about him, but will Google and see if his name pops up. Yes, having more than one - in fact several - diagnostic guidelines for, supposedly, one illness causes a huge amount of confusion. The whole thing is a mess.

How are you getting along with your questionnaire? I hope you have enough of them now for your course. Do let us know if you need more for your study, as I expect there are a number of folk who haven't read this thread, who would be prepared to chip in.

In various posts, cancer has been referred to in connection with M.E. It was some years ago that doctors who specialised in M.E. initially brought up the comparison with cancer. It was quite often reported that an 'average' M.E. patient was as debilitated as someone in late stage cancer or in the final six weeks of AIDS. Dr Nancy Klimas said something similar recently, as I'm sure you know. She said something to the effect that her M.E. patients were much more ill than those with AIDS, who were now benefiting from medication and, if she had to chose between them, she would rather have AIDS.

It's good to hear that someone has escaped the clutches of this foul lurgy. Keep well and don't push too hard.

Best wishes,

Countrygirl

"Dr. Fabulous"

Earlier I wrote:

Dear Dr. Fabulous,

Was it my comment that lead to your compassionate post? If so, I did not intend it to be hostile in the least. Regardless, I am afraid that what will be taken from your comments is simply confirmation of what I said in the paragraph from my earlier post.

Is it time for us to go our separate ways?

Well, Miss Fabulous, is a young British medical student/doctor. Looks like she is well on her way to becoming the one of the fine doctors we are all use to seeing. Mods, please don't mistake this for sarcasm - it isn't. It's simply the sound of distress and disappointment. I'm disappointed that Miss Fabulous didn't find anything more interesting to read here - or to learn. But then I guess Miss Fabulous has more important, real illnesses to learn about. Miss Fabulous.......please, Miss Fabulous - give us another chance........Oh Miss Fabulous......I hope you become a great doctor, perhaps a specialist in CFS?:ashamedlease?

ETA: One more thing Doctor, the fact that you have never encountered a case of CFS or ME that could be placed alongside any form of cancer only indicates you aren't quite as experienced yet as you need to be. Your statement is grossly incorrect. Keep learning dear - none of us are ever quite as fabulous as we think we are, even doctors!:innocent1: