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Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey

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The Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey the purpose of which is to determine the ease of patient access to ME/CFS Specialists and to assess the quality of medical care received by individuals with ME/CFS from all of their healthcare providers. While it is of primary importance to establish the quality of care received by patients on a country-by-country basis, the intent of this survey is to establish the need for improved care within the United States based upon the quality of their care when compared to that of other illnesses within the United States, and based upon the comparison of their care to that received elsewhere in the world.

The more robust the patient participation in this survey, the more significant the data and the more convincing the results drawn from it will be. We are hoping to obtain a minimum of 1,000 respondents in the United States. If you know ME/CFS patients, please encourage their participation. The results of this survey will inform us of the magnitude of need for ME/CFS Centers of Excellence, the services they should provide, and where they should be located.

This online survey is anonymous. Participant identity will not be revealed. Patients will be asked about their experiences with: access to ME/CFS specialists, barriers to access to ME/CFS specialists, the quality of care they have received from ME/CFS specialists, and the quality of care they have received from healthcare providers who are not ME/CFS specialists.

Patients will be asked to provide information, anonymously, about their current living circumstances (such as age, gender, and employment status), their ME/CFS diagnosis, ability to perform tasks of daily living, and illness onset characteristics. Patients will be provided with an opportunity to describe their medical care in their own words.

To access the survey please follow the link: https://redcap.is.depaul.edu/surveys/?s=wGI2stCALK

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9 thoughts on “Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey”

  1. KathiB says:

    Please fill out the survey it took me less than 5 minutes and it will help them do the research. it won’t hurt and maybe it might help someone close to you.

  2. isabelsunshine says:

    Great ! A survey will be done! Is there any chance that a patient from Germany will be accepted???
    Here CFS is absolutely UNKNOWN and undiscovered, untreated und completely misunderstood.They know the term, but nothing else about it- although we even have a” CFS- clinic “in Germany. The stories about the treatment there are VERY meager and doubtful, nothing to recommend.

    With CFS in Germany you are absolutely lost and left alone.

    1. pookiebear364 says:

      if we do not take the time to answer surveys and make her voice is heard it is my believe that people who suffer from chronic fatigue immune deficiency syndrome will continue to be seen at best as second-class citizens who are not worth the disability funds they receive and at worst individuals who need severe psychiatric help. I hope this message gets scene by many people and that many more will participate. It is only by making our voices heard, will money be invested into research of this curable I believe disease. From what I have seen on the web from people who suffer from chronic fatigue immune deficiency syndrome and that many of them have had good success with non prescription medications this is something that I am very interested in and think that money should be invested into looking for a non prescription way of being able to treat this disease instead of padding the pockets of the pharmaceuticals. I’m sure there are a number of people who will disagree with me, however, for some people who have to take a lot of medications already, adding more to the list I do not see as making the quality of life any better. I believe quantity of life is less important than the quality of life for me quality is everything.

    2. pookiebear364 says:

      sorry about the typos, using voice typing on my cell phone. It likes to change my words

    3. cmesmile says:

      I am so happy to see a survey being done about access to care for ME/CFIDS specialists. I live in Eastern North Carolina and have no specialists available. I go to the Brody School of Medicine for my primary care and they sent me to Charlotte for the ME/CFIDS diagnosis. The insurance would not cover the “out of network” doctor, plus it was a 250 mile trek to get there. I am trying to deal with my primary care handling my symptoms. I wish the medical schools were teaching more about this diagnosis.

    4. Jacqz says:

      I just did the survey, and I am in Australia. Anyone around the world can do it. We are the same in Australia, completely alone in our illness with nowhere to turn to for help. Alternative practitioners such as Naturopaths are very sympathetic and try to be helpful, but are limited in how they can help. Doctors are useless! They do NOT want to know. I have had this disease for 20 years, diagnosed after 5 years. Only one doctor in all that time was sympathetic, and tried, but was limited in what he could do. Unfortunately, he moved away, and I have been alone with ME ever since. It is disgusting. If this was any other illness they would be liable for their total and utter NEGLECT!!!

    5. Jacqz says:

      Are you interested in becoming an email Penpal?? I was learning German, but gave up because I had nobody to “speak” to or practice with. I have ME, so we could maybe help each other? If you are interested, that’s great. But if not, that is fine too. I will understand…

    6. Jacqz says:

      I just did the survey, and I am in Australia. Anyone around the world can do it. We are the same in Australia, completely alone in our illness with nowhere to turn to for help. Alternative practitioners such as Naturopaths are very sympathetic and try to be helpful, but are limited in how they can help. Doctors are useless! They do NOT want to know. I have had this disease for 20 years, diagnosed after 5 years. Only one doctor in all that time was sympathetic, and tried, but was limited in what he could do. Unfortunately, he moved away, and I have been alone with ME ever since. It is disgusting. If this was any other illness they would be liable for their total and utter NEGLECT!!!

  3. itisme4u says:

    So thankful to see that someone is taking this illness serious.
    I think that EVERYONE who has CFS should do all they can to help with getting patients so help to ease their pain and help them to get their life back. Remember, it isn’t quantity of life that counts, it’s quality.
    If the pain and suffering could bleed then people would be aware of how serious this illness really is.

    I could continue,but it would be repeating what is already known and what has to be brought to lite about how serious this subject really is. I will do all I can and feel free to contact me to share our experiences..
    Patients need to know that they are not suffering alone. Sometimes it helps just to talk and say the words that you are feeling.

    May we all live and be well. And be willing to work hard and be devoted to this project.

    PS. I am part of a FB support group. Would it be proper to share this survey?

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