Interactions with Medical Professionals

[Elizabeth Kendrick]

Dear Elizabeth,

here are my concerns. I look forward to reading your reply.

Elizabeth Kendrik M.S. stated in a message on CoCure 04 November 2012 06:25:

"Do you suffer from chronic fatigue syndrome? How has your interaction with
medical providers affected you? Would you like to share your experiences
with others? Please participate in the survey below to add your voice to the
body of research on chronic fatigue syndrome. After completing the survey,
please share this link with others who suffer from CFS.
https://www.surveymonkey.com/s/R79PHB2 "

I have gone through this survey and can detect nothing that relates to "How
has your interaction with medical providers affected you?". There is a page
of questions about interactions with medical professionals; e.g.: "Medical
professionals think I should be tougher" [select from - Seldom, Sometimes,
Often, Very Often]. There is nothing about how this affected the
respondent.

There are virtually identical pages of questions for interactions with
Social Services, Family, Spouse/Partner, Work colleagues. There are
questions seeking details about diagnosis and symptoms. There are questions
that appear to be evaluating coping, anxiety, depression and emotional
lability.

I do not believe that this research is about: 'How has your interaction with
medical providers affected you?'

If this is a mistake, in my opinion it would still be unacceptable to mislead potential
research participants.

Peter Kemp

Dear Mr. Kemp,
I appreciate you writing to me, as I truly care about how my research impacts my participants. I sincerely did not intend for my research to appear deceptive in any way, and it was certainly not designed with deception in mind. The survey questions about the frequency and severity of CFS symptoms and level of stress are included to provide a sense of symptom distress and how that might be related to experiences with medical professionals. In psychological research, we typically do tell participants what the focus of the study is, but not specific hypotheses. The purpose is not to deceive, but to try not to sway participant responding one way or another. Because of my own experience, I wanted to try to do research that might make some small contribution toward educating medical professionals and, in turn, improve the experiences of those diagnosed with CFS.I hope that I have adequately addressed your concerns.

Kind regards,

~Elizabeth Kendrick

P.S. I also sent this message to you via email, since you had emailed me. I hope you received it.

 

[Elizabeth Kendrick]

I feel much of the scepticism relates to the fact that this is yet more questionnaire based research, using a convenience sample. There have been many hundreds of papers based on self report questionnaires focusing on this data is rarely illuminating.

Personally, I feel It is not the perceptions of patients that are important, but the actual impact and outcomes - actual activity levels of patients, actual employment related outcomes, neuropsychological testing and so on. Then on the medical practitioners side, what was the actual process of diagnosis and treatment do average medical practitioners carry out? Did the practitioners perception of the impact of the disease match the actual impact etc?

I do understand that this current survey is simply preliminary research, which is necessary to show there is an effect worth studying, which is in turn necessary for applying for research grants to do a more rigorous study.


Interactions with medical professionals is still a potentially interesting area of study, but the key is to study the treating medical professionals and their perceptions at the same time as the patients. That way we can find out the true convergence or divergence of perception and areas where this can be improved. This is one of the real areas which is lacking in medical practise: quality control from the patients perspective. If a medical practitioner does a poor job, the patient will simply go elsewhere, while the practitioner may continue to do a poor job, being unaware of how their patients perceive them.

On a related tangent, there is very little research on CFS and ME, when considering the societal disease burden. It is literally of a magnitude of order lower than expected, with predicted funding levels (based on disease burden) at 20+ times what is currently spent. An interesting study would be on the perceptions of researcher both within and outside CFS or ME research and to discover any barriers that are preventing researchers to enter the field.

You shared some valuable perspectives, and I thank you for responding. I am experiencing some reluctance, at this point, of continuing with my previous plan of devoting my life's career to researching CFS. I care deeply about what my experience with suffering was like, and I envisioned contributing research to educating the medical community of the experiences of CFS sufferers. The responses of some of the CFS community has left me wondering if this is really a field I want to remain in, though. If, however, I do renew my vision of doing that work, I will certainly bear your suggestions in mind.

Kind regards,

~Elizabeth

Kind regards,

~Elizabeth

 

[Elizabeth Kendrick]

Hi..

I'd like to point out a couple of things you obviously arent aware of


Then in the next paragraph, you do point out it is a CFS study. So its confusing, What is this study for? Is this a study on "chronic fatigue" or is this a study on "chronic fatigue syndrome"?

Chronic fatigue is a different condition to CFS. Chronic fatigue is a term used for the fatigue in many other kinds of illness eg MS, cancer etc etc
or are you doing a study which is mixing two completely different medical conditions (CFS and chronic fatigue) together?

Are you aware that chronic fatigue and CFS and two different things? I suggest to change "fatigue" to CFS if this is a CFS study.



You dont seem to be aware that ME/CFS can be quite severe in some.. answering the studies questions for some could in fact cause them to ME/CFS crash due to post exertional fatigue and this could even be enough to put some bad CFS cases in bed for several days. Not due to the "stress" placed on them by the questions they are being asked.. but due to the length of this study and the effort to type and just to think and to be online. There are many who never or often cant even post at the forums due to (what you seem to call "fatigue")and can only read a bit here.

So be aware that it is the not as severe group who have the strengh to do questionaires and answer these.. and even some of the moderates.. may get more then discomfort from answering questions.

Thank you so much for offering your perspectives and ideas. I am reconsidering my previous plan to devote my life's career to researching CFS, but if I do continue with that plan, I will certainly be more consistent in my use of the term CFS and will likely add ME to that, as well.

I actually discussed with my advisor, prior to beginning this study, the exact concern that you voiced - that the more severe sufferers would likely not be able to complete the study. I know that, during the dark days when I was incredibly sick, I would not have been able to complete a study such as this, due to the cognitive fog and post-exertional malaise I sometimes experienced with cognitive activies. We knew of no way to bypass this concern, so we planned to discuss this in the limitations of my study. If I could find a survey system that allowed participants to save their responses and come back to complete them, that might help. Unfortunately, the system our university currently uses (surveymonkey) did not allow for that option. Fortunately, our university will soon be switching to Qualtrics, and my hope is that it will have a save option.

Thank you for taking the time to respond.

Kind regards,

~Elizabeth

 

[Elizabeth Kendrick]

Thank you to all who participated in this research study. Almost 300 people have participated, so my advisor and I have decided to close the survey. I truly appreciate each of you who allowed your voice to be part of this study. My hope is that we will make a difference in educating the medical community about the experiences of those who suffer from CFS.

Many thanks!

~Elizabeth

 

[Valentijn]

You shared some valuable perspectives, and I thank you for responding. I am experiencing some reluctance, at this point, of continuing with my previous plan of devoting my life's career to researching CFS. I care deeply about what my experience with suffering was like, and I envisioned contributing research to educating the medical community of the experiences of CFS sufferers. The responses of some of the CFS community has left me wondering if this is really a field I want to remain in, though. If, however, I do renew my vision of doing that work, I will certainly bear your suggestions in mind.

It's unfortunate that you feel that way. I think we have been pretty civil, but if you can't accept that we are cautious when it comes to psychological research, and that people are concerned with the quality of psychological research, you probably would have trouble working in the ME/CFS field.

We have been, and continue to be, badly damaged by poor research and theories that are not supported by objective outcome measurements. It does feel rude to me to be so blunt about our fears and suspicions, since you undoubtedly do have good intentions, but that bluntness is motivated by a greater need to protect ourselves from the physical and permanent harm to many of us which has resulted from psychological theories about the causes and perpetuating factors of ME/CFS.

It's a very complicated (mine)field that you're thinking about walking into, and I can certainly understand why you might want to avoid that in favor of something less controversial.

 

[Elizabeth Kendrick]

I understand the suspciousness and mistrust, Valentijn, particularly since I recall my frustration and sense of betrayal upon searching the psychological journals and finding that almost all research denigrated the experiences of CFS sufferers as being psychopathological. I had hoped to bring a different light to psychological research by providing research that validated their experiences and educated medical professionals.

At this year's APA Convention, there was a call from Dr. Lenny Jason and Dr. Antoni for more psychologists to enter the field of researching CFS, and they stated how there was a dire shortage of researchers who had taken this cause to heart. Given my own difficult experience with CFS symtpoms, I wanted to devote my life's career to this research. I was so passionate about that plan, and I was happy to spend an afternoon with Dr. Jason in September, discussing my research ideas and listening to his. As you say, though, there are certainly fields where research would not be such a minefield, and I am now leaning toward finding one of those fields to research. I think a difficulty for anyone who enters this field of research will be that they will likely be experiencing battle with the "powers that be" who would define CFS as being a form of psychopathology, but in addition, such a researcher would also potentially experience resistance from the very people she/he was trying to help, the sufferers themselves. I had counted on the battle with the "powers that be" and was prepared to face it. I guess I underestimated the response I would receive from some in the CFS community, though. As a new researcher, I am now leaning toward directing my efforts in some other direction that will not be such a minefield (as you put it).

I truly appreciate all who participated in this study, though. My hope is that, if this is my only foray into CFS research, it will still make some positive difference.

Kind regards,

~Elizabeth

 

[taniaaust1]

Thank you so much for offering your perspectives and ideas. I am reconsidering my previous plan to devote my life's career to researching CFS, but if I do continue with that plan, I will certainly be more consistent in my use of the term CFS and will likely add ME to that, as well.

Im very sorry to hear that peoples comments have affected you enough to now be reconsidering your plan to devote your life's career to CFS research. Sadly it isnt just you but other researchers too are leaving this field due to the hard time they are given (rather then the ME/CFS community trying to work with researchers who are willing to listen to improve studies done).

I'd like the ME/CFS community to think over what is going on, we need to be helping those researchers "willing to listen to the concerns".. we NEED researchers in this field and so many are just being completely discouraged. ME/CFS cant go anywhere without researchers and new ones being able to enter to ME/CFS field.. we even need good psych researchers to keep balancing out the bad psych researchers.

I actually discussed with my advisor, prior to beginning this study, the exact concern that you voiced - that the more severe sufferers would likely not be able to complete the study. I know that, during the dark days when I was incredibly sick, I would not have been able to complete a study such as this, due to the cognitive fog and post-exertional malaise I sometimes experienced with cognitive activies. We knew of no way to bypass this concern, so we planned to discuss this in the limitations of my study.

Its great to hear you thought of that and that you were going to discuss that issue in the limitations of the study.

If I could find a survey system that allowed participants to save their responses and come back to complete them, that might help. Unfortunately, the system our university currently uses (surveymonkey) did not allow for that option. Fortunately, our university will soon be switching to Qualtrics, and my hope is that it will have a save option.

I will certainly be more consistent in my use of the term CFS and will likely add ME to that, as well

That is an area which I think you will get trouble from people with no matter what you do. Many people (myself included) dont really like ME and CFS being confused.. ME is not another name for CFS but something which is a different thing with a different defination and often with different patient findings too if different groups using the different definitions are studied. Thou many orgs have nowdays got ME/CFS in their title.. allowing people to just take this as two separate illnesses eg ME AND CFS (and some orgs see them as being separate themselves) meaning they are supporting both patient groups or to use the illness names together.

Im not sure if you are aware.. International ME diagnostic guidelines have now been written and published in scientific journal (Oct 2011).. to help with the split between the two illnesses and state they should not be confused (which are supported by many ME specialists around the world). For more on that http://sacfs.asn.au/ On left if you scroll down a little is the International consensus definition for ME. In the near future it should be well recognised ME and CFS are not the same.

best luck with the research.

 

[taniaaust1]

I think a difficulty for anyone who enters this field of research will be that they will likely be experiencing battle with the "powers that be" who would define CFS as being a form of psychopathology, but in addition, such a researcher would also potentially experience resistance from the very people she/he was trying to help, the sufferers themselves. I had counted on the battle with the "powers that be" and was prepared to face it. I guess I underestimated the response I would receive from some in the CFS community, though. As a new researcher, I am now leaning toward directing my efforts in some other direction that will not be such a minefield (as you put it).

I truly appreciate all who participated in this study, though. My hope is that, if this is my only foray into CFS research, it will still make some positive difference.

Kind regards,

~Elizabeth

Hi .. i know that Dr Lenny Jason dont get a heap of crap from the ME/CFS community but that is proably only as he's well respected by many of us. There is a real need for those doing "good" psych research to be doing studies to balance and over ride all the "bad' psych studies. Without good studies helping over ride the others.. the others will keep severely predominating the field. Is that what people want? The biased studies are nearly always running unchecked (just imagine if we have several groups of psych researchers.. disproving the psych stuff every time a biased study was published. Bad psych studies overwhelm the whole of ME/CFS research).

I personally think you could do alright in this field now that your eyes are more open to how severely all the bad research out there has affected many..those who at one time or another have been harmed by the bad research out there would be even more negatively outspoken towards a new psych researcher.

I think what made you a huge target on this occassion..is you are completely new to everyone and secondly.. recruiting from public forums as a new researcher to the ME/CFS field could be said to probably be asking for trouble as to many, it may feel like a researcher intruding onto their sacred homes.. places they usually feel safe. ME/CFS forums are the only place where many dont have to worry about being judged over the illness.
I think if you had done your recruitment for your first study throu say a "good" ME/CFS doctor .. you just wouldnt have put yourself in the line of fire and would of got more trust.

If you are honest with the results you get from this study and dont go twisting things in biased ways... you'll probably have the community behind your back for your next study if you decide in future to do more studies and it should be a lot easier.

There is a real need out there for the medical community to understand just how badly the treatment of many with this disorder is affecting the ME/CFS community (to the point that it has turned this community group into a very mistrusting and difficult community to deal with). With proper illness support and without the bad experiences most of us have had due to Wessely school research influence on others who are supposed to help us (not harm us), this just wouldnt be happening. Most of us have had actual bad experiences due to the current info out there.

There probably needs to be a good psych study on exactly how badly poor research and lack of support has impacted upon us. I think it would be a shocking study if certain situations were studied.. eg how many of us have had car accidents when forced to drive while very ill just cause gov agencies thought this illness wasnt real and they forced one to go to appointments due to threats? (Ive smashed up two cars due to that).

How many of us have been placed in dire situations to survive due to doctors not supporting the person getting home support when needed? (I choose to go to jail for a month so I could be fed as I was having much trouble getting my food. Fortunately I now do have a gov support worker to help me in my home). How many of have been left even more disabled after being talked into attending something that was supposed to psychologically or help us with physio? (I was left in such a bad post excertional state that I couldnt even use a fork to eat). I have so many other examples of incidences where the current prevailing psych view has affected me by how its made others act towards me due to how they thought of ME/CFS (not nastily as such but rather just due to lack of belief that its a physical illness with physical reconcussions so one just dont get the help one needs or forced to do things one shouldnt be doing). Im sure many others out there have many incidences too.

Many ME/CFS patients are being traumatised by the lack of understanding of the illness and not being treated as they should be due to that.

 

[Hope123]

You shared some valuable perspectives, and I thank you for responding. I am experiencing some reluctance, at this point, of continuing with my previous plan of devoting my life's career to researching CFS. I care deeply about what my experience with suffering was like, and I envisioned contributing research to educating the medical community of the experiences of CFS sufferers. The responses of some of the CFS community has left me wondering if this is really a field I want to remain in, though. If, however, I do renew my vision of doing that work, I will certainly bear your suggestions in mind.

Elizabeth, I hope you reconsider your decision to work in this field. Patients need good research and good researchers.

In my prior job as a healthcare professional, I often worked with patients who were resistant to my recommendations (stop smoking, lose weight, stop that cocaine habit, cut down on the drinking, etc.) and even outright hostile to what I had to say. There were a lot of times I wanted to give up . But I persisted because I felt someone needed to reach out them. So I plodded on and tried different ways to get out my message to them reasoning to myself that people who are sick were often not at the best emotionally. It worked -- some people did change their habits. My patient with the cocaine habit finally kicked the habit after numerous attempts and visits by me when she was hospitalized; my obese patient with diabetes lost weight and maintained that loss -- he sent me a thank you card. What I learned is that you have to do accept people where they are and work with them where they are.Seek first to understand, then to be understood.

There are probably numerous factors you considered in your decision but I hope you do not give up so easily. As one of my mentors says, the people who do best in research are not necessarily the smartest but the ones with "fire in their bellies."

 

[AFCFS]

'dog crap on the shoe' of illnesses

Thanks for the the visual and odoriferous reflection - very accurate.

 

[AFCFS]

You shared some valuable perspectives, and I thank you for responding. I am experiencing some reluctance, at this point, of continuing with my previous plan of devoting my life's career to researching CFS. I care deeply about what my experience with suffering was like, and I envisioned contributing research to educating the medical community of the experiences of CFS sufferers. The responses of some of the CFS community has left me wondering if this is really a field I want to remain in, though. If, however, I do renew my vision of doing that work, I will certainly bear your suggestions in mind.

I sometimes enjoy watching "So you want to get/be..." videos. I have found that if one truly wants to get/be "something" it is best not to focus listening to others who have negative feedback on it. It does not mean the negative feedback is not valid, just it may not facilitate one's goals - depending on one's mindset.

 

[kauri]

I think this page speaks volumes about ME/CFS research:
http://report.nih.gov/categorical_spending.aspx
Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
some examples (annual dollar amounts in millions):

362 Prostate Cancer
277 Asthma
151 Multiple Sclerosis
78 Crohn's Disease
16 Psoriasis
11 Myasthenia Gravis
6 Chronic Fatigue Syndrome (ME/CFS)

I can understand that researchers from one perspective might want to investigate the experience of having the 'dog crap on the shoe' of illnesses - but does that research help patients? Some of Snow Leopard's refs are old and there are many more like those. Some projects were superbly undertaken and presented - are we now taken seriously? I think not.

I know 3 people with MS (relatives). Every one of them has had a quality of life in the past 2 decades that I could only dream of. MS gets 25x more funding than CFS because MS is considered real but CFS is not. I think it is that simple and the only way to change it is with proper medical research. How I think or feel about being disenfranchised, stigmatised, abused and neglected does not change a thing and neither does researching them.

 

[Xandoff]

This is not a comment about the survey. Until an Authority in the Medical Profession of the USA (Surgeon General etc.) publicly states that ME is a very real and valid illness/disease the over-burdened Medical Professionals will continue to LABEL us as Psych patients or malingerers. We are strangers in a strange land.

 

[jimells]

At this year's APA Convention, there was a call from Dr. Lenny Jason and Dr. Antoni for more psychologists to enter the field of researching CFS, and they stated how there was a dire shortage of researchers who had taken this cause to heart.

I don't really understand why there is a dire need for psychological researchers to research an illness that is clearly not 'psychological'. Is there a dire shortage of psychological research in prostate cancer, asthma, or the other illnesses on Peter Kemp's list?

I have trouble with the concept of conducting 'sympathetic' research in order to refute other research that is so obviously flawed. The medical industry has concluded that calling our illness 'psychological' suits its purposes. Until that conclusion is no longer suitable, contrary research will continue to be ignored.

 

[golden]

In my opinion there should be no more psychological research done on this physical illness.

It will take honest psychiatrists and psychologists to assert this.

 

[JaimeS]

To anyone interested in previous research, there have been a few interesting studies from both sides of the fence.......

Members of this forum will be pleased to note that most studies were strongly sympathetic towards the experiences of the patients. Many of the studies relied on structured interviews too, which is what I'd do if I was conducting similar research.

Wow, I had no idea this kind of qualitative study was even out there. I'm fascinated! I wonder if this might be better to hand to your doctor than a biomedical study, actually.

-J

 

[Snow Leopard]

Wow, I had no idea this kind of qualitative study was even out there. I'm fascinated! I wonder if this might be better to hand to your doctor than a biomedical study, actually.

-J

There are actually quite few more that I had missed that were cited in the aforementioned thesis.