1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Interactions with Medical Professionals

Discussion in 'Active Clinical Studies' started by Elizabeth Kendrick, Nov 4, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,266
    Likes:
    1,675
    Australia
    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.
    Sushi and Valentijn like this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,826
    Sth Australia
    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.
    Jenny likes this.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,826
    Sth Australia
    An interesting question that is on that survey.. eg "What is the gender of the medical professional who diagnosed you?" I personally do think male doctors do tend to give females a CFS diagnoses quicker then a female doctor may.

    Another thing I did like about this survey is that it did in fact include a lot more symptoms on it then many other surveys do (so it was about far more then just fatigue). It also asked if there was any symptoms not on their list that you had and also had a section to add in your worst symptom too if it wasnt on their list where it asked what your worst symptom was.. (mines POTS so I was then able to add that in).

    Anyway..other then that "fatigue" line refering to CFS right at the start of it, over all it seemed like a fairly good survey. (it also asked about what prescription meds on is one for it).

    When rating symptoms thou that was confusion.. as Im on prescription drugs for things so that made my symptoms rate less then they would of done. This could make someone look at my symptom degree responses and have them wondering why Im taking drugs for those symptoms.
  4. maryb

    maryb iherb code TAK122

    Messages:
    2,757
    Likes:
    1,784
    UK
    Elizabeth may I suggest what you may have had was Post Viral Fatigue, a totally different illness to ME/CFS. But who really knows. People with ME/CFS do recover but for most this period doesn't last. Studies show that for those who recover within 1-2 years they have the best outcome, so you may have been one of the lucky ones.
    taniaaust1 likes this.
  5. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    "Rarely illuminating" - studies such as this I agree Snowleopard - now if they came at it from a fully informed - all the latest research/pathology findings - and ask how did your Doc do - the answer is I now know more than they.

    And speaking of medical interactions my own Consultant Neurologist with "high spots" on MRI brain scans admitted defeat.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,523
    Albuquerque
    Hi Elizabeth,

    Another thing that has people hesitating about participating in this survey is that several others have proposed similar studies to members of this forum, and in interacting with them, it became clear that the results of the survey might be used--down the road (and unrelated to the intention of the researcher)--against us.

    The perception of ME/CFS is such a powder-keg issue for patients that we will be cautious about what research we participate in. So, aside from the risk of PEM that participating might bring, I think patients are concerned that the "findings" of a survey that is not optimally designed and that doesn't use a clearly defined patient group (such as the patients of a ME/CFS specialist who has diagnosed the survey participants according to a respected criteria such as the Canadian or International Criteria), could be used in ways that make our need for proper medical care even harder to find.

    So, referring to the quote below, I think there are other risks than "discomfort"--which might actually be a "crash" for some. I think we are actually concerned that "the findings from this project will help increase the body of research on the experiences of individuals suffering from chronic fatigue syndrome"--but in a way that is negative for patients.

    This is not intended as criticism, but to help clarify the hesitation you are finding here.

    Best wishes,
    Sushi
    justy and Valentijn like this.
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Know your subject matter Elizabeth and even better know that "psychology" (I did too at Uni) is far down the line from biomedical findings.

    Rethink, redraft.
  8. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    As someone with experience designing/ analyzing surveys, I'd say give Elizabeth a break everyone. What she has,. how long it took her to recover, and how much she recovered or not should have no bearing on the quality of the research. Judge solely on quality of research; I realize that's hard for non-researchers. Especially for someone new to the field, insulting them will only drive them away. We need all the researchers we can get interested in this illness.

    I understand people are concerned about how the results of research will be used but we need more than anecdotes or even a few qualitative studies of how medical professionals treat people with CFS to make a cogent argument that this is an important piece of why CFS patients have such a hard time. It's definitely an added stress to the disease itself.

    I have not read through this survey but my suggestion to you Elizabeth is to take these comments to heart and modify your survey as possible from people's comments as it seems like you might be doing. What I've done with surveys in the past even before IRB approval is to test them on a small focus group and get a sense of if I'm hitting the right content/ tone and to get a sense logistically of how much burden the survey maybe for people to fill out with CFS. It might help to have a "save" function so people can take time doing the survey or allow people to have someone fill it out for them with a box to indicate that was done. As you know, there is no such thing as a "perfect" study; all designs have their strengths and weaknesses and those much be taken into account when discussing results.

    [It's true the length and the format of a survey will affect who responds but CFS patients have responded to quite lengthy surveys in the past. Some of these surveys have been published.]

    It might help to get Lenny Jason's "blessing" on a survey. As you know, Dr. Jason is well-respected in the community and getting a short note from him to the community to introduce you might help. This tactic has been used in other areas to get buy-in and you are already dealing with a suspicious group that has not been well-treated in the past. Cort Johnson is the owner of this site and getting Cort's blessing would help too. He sometimes will highlight research in his front page articles for the site. Contact the moderators for that; FYI, Cort has a ?MS degree in environmental research.

    To get more responses, don't put it on "ME/CFS doctors", put it under "Active Clinical Studies." This subforum is for people looking for/ discussing physicians whereas the latter is where people recruiting for studies post.

    Good luck.
    Snow Leopard and Nielk like this.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,884
    Likes:
    4,826
    Sth Australia
    One of the mods left it under the "ME/CFS doctors part" as she had the same post posted in 3 different parts of the forum (one of those 3 being here) so the 3 posts got merged into the one.

    I suggest for her to pm one of the mods to move this whole merged into one thread into the Active Clinical Studies so it will get more attention there and not start a 4th post on the same thing..
  10. Peter Kemp

    Peter Kemp

    Messages:
    27
    Likes:
    125
    My reply to 'their' reply:
    Dear Faustina Layne,

    Firstly, am I to understand that your establiment's Ethics Committee consider unethical research practice acceptable when the research is adjudged to be 'minimal risk'?

    Secondly, how is 'minimal risk' calculated? The participant group is people with Chronic Fatigue Syndrome (CFS). This is a vulnerable group, often suffering severe illness, disability and loss; not to mention stigma and prejudice. (I will gladly provide references if you require).

    I find your response to my query extraordinary and would be grateful to recieve information about your formal complaints procedure.

    Yours Sincerely,
    Peter Kemp MA


    ----- Original Message -----
    From: Layne, Faustina
    To: Peter Kemp
    Cc: Beesley, Denise ; ekendrik@ou.edu
    Sent: Monday, November 05, 2012 11:01 PM
    Subject: RE: IRB Number: 1382 Approval date: 10/22/2012
    RE: IRB #1382 – “Perceived Illness Invalidation from Medical Professionals and Perceived Stress as Predictors of Symptom Distress”

    Mr. Kemp,
    The study noted above was reviewed as minimal risk and the participation is voluntary. You may contact the researcher to discuss your concerns. The researcher can address based on her disciplinary training. I have copied her on this reply.

    Thank you.

    Faustina Layne Director Office of Human Research Participant Protection - IRBUniversity of Oklahoma OFFICE: (405) 325-8110
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,451
    Likes:
    1,777
    Midwest, USA
    I am not a researcher and have never designed a study. I do wonder, though, what conclusion will be drawn from the answer to the above.

    It could indicate how many times the person has failed in correctly pacing their exertion. If the answer is zero, it could indicate that the person is bed bound and incapable of exertion.
    kauri likes this.
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,145
    Likes:
    8,592
    Amersfoort, Netherlands
    I agree that what she has/had is irrelevant. Which is part of the reason why I get (more) suspicious (than usual) when anyone with a psychological background claims to have had ME/CFS as a means to gain credibility with uncooperative ME/CFS patients. The Lightning Process uses that approach to talk clients into parting with their money, as did the slimeball at the the "fatigue center" I was going to in an attempt to talk me out of trying to get my OI diagnosed.

    Maybe it isn't fair, and maybe it's completely wrong in this case, but when a psychologist comes up with a questionnaire that demonstrates a poor understanding of ME/CFS, I'm not inclined to give them a break just because they might have had a fatiguing illness in the past. I think they are the ones that need to prove that they know what they are talking about and that they understand ME/CFS at least as well as we do.
    Tito and redrachel76 like this.
  13. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,380
    Likes:
    1,845
    London
    I was just wondering what negative spin could be placed on the results? Have been through the questionnaire but lack the knowledge of how the end results could be used against us.
  14. Peter Kemp

    Peter Kemp

    Messages:
    27
    Likes:
    125
    I apologise if I seem to have been heavy-handed over this, but I have seen too many research invitations about psychological and psychosocial factors of M.E. and CFS that were disingenuous. Why do researchers appear to believe that they must approach us surreptitiously and wheedle for participants? PWCFS are generally incredibly kind and supportive and approachable (see some of the comments above).

    On another note: the invasion of patient support groups by researchers can be damaging for the groups concerned. This is something that has been researched. It can lead to resentment and even the withdrawing of members who do not want to feel like they are being spied upon. Support groups are for patients. Visitors must be on their absolute best behaviour - which does not in my book, include being disingenuous.
    golden, Sea, Valentijn and 1 other person like this.
  15. maryb

    maryb iherb code TAK122

    Messages:
    2,757
    Likes:
    1,784
    UK
    golden and Valentijn like this.
  16. AFCFS

    AFCFS Senior Member

    Messages:
    312
    Likes:
    243
    NC
    While I do not have a problem with the motives of the survey, as stated, I do question the survey delivery format and possible negative outcomes of its delivery format.

    On the one hand, the survey preamble states:

    "Confidentiality: In published reports, there will be no information included that would make it possible to identify you. Research records will be stored securely, and only approved researchers will have access to the records. Your name or identifying information will not be collected or listed on the surveys in any way."

    "Your name or identifying information will not be collected or listed on the surveys in any way" - this seems ambiguous. First, it seems like it should be name AND identifying information, not OR.

    And then it raise the question if IP address collection is used. That is an option with Survey Monkey, as noted on the help section of their website. How do I turn off the IP addresses collection on the responses? Maybe the wording could be changed to reflect what is meant by "identifying information." Is it personally identifying information or all identifying information? "In any way" leads me to the impression that IP addresses are not collected.

    If the IP address is not collected, then the survey may run a risk of "submitting multiple submissions," as acknowledged by Survey Monkey on page 23 of their Smart Survey Design document.

    But even if the apparent ambiguity of the "identifying information" was specified to state collection of IP addresses, and IP address was used as a determinant for multiple submissions, it seems not to address the possibility that may result if one or more respondents used multiple IP addresses, as may easily be achieved by various means (e.g. using the TOR network). In such cases then it seems like there is the possibility that the collected results may not be indicative of the original intent of the survey.

    Survey Monkey's acknowledgement that "One final thing that researchers must take into consideration is that the Internet is not always a perfect world" on page 25 of their Smart Survey Design document seems to be an understatement.

    Perhaps some statistical analysis may minimize such possible effects. I do not know. But, if they cannot, then there seems like there is a possibility that there may be a doctoral study that could potentially just add to a an already largely misinformed professional base.

    I would suspect that conducting an online survey is relatively easier than in-person surveys, or more tightly controlled surveys. But it seems that the results might suffer, and in an extrapolative sense may not provide benefit despite good intent.
  17. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    For the record, Peter, if you don't know it already, I am a patient also.

    In addition, this is a public forum. Just FYI everyone but when you post anything on the Internet on a site without specific rules stating implicitly that your postings will be kept confidential (e.g. some sites that connect healthcare providers with their patients have this), that material is considered in the public domain and researchers can use it without having to have your permission. So people participating on a public forum should be aware of that if they are not already.

    [This is not in regards to the survey since that does have a consent on the first page and some degree of restricted access.]

    Thus, although this is somewhat of a patient support forum, I don't think it can be reasonably construed in the same way as an in-person/ restricted access online support group. I happen to belong to an in-person group and we do have explicit rules about confidentiality that are conveyed to newcomers; people who are not patients who want to speak to our group usually are screened a bit beforehand by our leaders so we know generally what their purpose is. In the US, researchers are not be allowed to proceed with a project/ publish their findings without getting consent from support group members formally; this is federal law so there isn't invasion by researchers of support groups in this manner. But the rules in that situation are different from laws in the US that govern Internet postings on public forums.

    Deception of subjects in research is generally not tolerated. It's true that some psychological studies draw conclusions that are biased against ME/CFS subjects but not all do and it's difficult to prove if researchers had purposely intended to deceive subjects. In terms of this specific project, it's also not always deception that leads to potentially confusing or poor question selection or wording; sometimes, the research group just hasn't pre-tested the survey and know enough of the lay of the land.

    I also hesitate to excise out a whole field of researchers based solely on their title. I'm more interested in their actual work. One of my mentors was a professor of medicine whose background was in behavioral psychology yet his work expanded across different areas of medicine ranging from nutrition, skin problems, depression, to pain management. He was superb at designing/ analyzing medical studies, supervised MD researchers, and thus was awarded his title in medicine even though he did not treat patients. At my public health school, the top professors included a lawyer, an economist, and a sociologist. Remember that the top epidemiologist in CFS (people who study definitions, risk factors, severity, distribution, etc. of disease) is not an epidemiologist but a psychologist -- Lenny Jason.
    taniaaust1 likes this.
  18. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,266
    Likes:
    1,675
    Australia
    To anyone interested in previous research, there have been a few interesting studies from both sides of the fence:

    A review and meta-synthesis of qualitative studies on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    http://www.ncbi.nlm.nih.gov/pubmed/21571484

    Chronic fatigue syndrome: sufferers' evaluation of medical support.
    http://www.ncbi.nlm.nih.gov/pubmed/9204018

    Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyalgia
    http://qhr.sagepub.com/content/12/2/148.abstract

    General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study
    http://www.bmj.com/content/328/7452/1354?variant=full-text

    Chronic Fatigue Syndrome -- Overcoming the Attitudinal Impasse (J of CFS)
    http://www.cfids-cab.org/Stein.pdf

    Patients' perceptions of medical care in chronic fatigue syndrome.
    http://www.ncbi.nlm.nih.gov/pubmed/11352411

    Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study
    http://www.biomedcentral.com/1472-6955/8/2?fmt_view=classic

    An ‘Overwhelming Illness’
    Women’s Experiences of Learning to Live with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
    http://hpq.sagepub.com/content/12/2/203.abstract

    Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome
    http://www.tandfonline.com/doi/abs/10.1080/14768320600976224

    The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives
    http://www.ingentaconnect.com/content/rmp/qpc/2009/00000017/00000004/art00004



    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.
    kauri, taniaaust1 and Enid like this.
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    You wouldn't happen to have data on that would you ? Not neccesarilly published stuff, even raw calculations and a list data sources would be helpful. Feel free toPM me, if you are not comfortable posting it publicly - I promise it will go to a good cause !

    IVI
  20. Peter Kemp

    Peter Kemp

    Messages:
    27
    Likes:
    125
    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.
    golden, kauri, AFCFS and 2 others like this.

See more popular forum discussions.

Share This Page