AndyPR
Senior Member
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- 2,516
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Livestream today! IACFS/ME Preconference event at Institute of Neuro Immune Medicine
- Thread starter aimossy
- Start date
Missed it all.
Kati
Patient in training
- Messages
- 5,497
Ron answered a question about the definition of severe ME
He said there are no official definition but from his point of view, a severe patient is a bedbound patient and unable to go out to see a doctor. In my opinion it would fall in the category of 'very severe'.
I thought about the issue a few days ago while answering Dr Jason's questionnaire, what is the definition of bedbound and housebound? In my opinion there are many shades of bedbound and housebound of ME patients. It is used to stratifying severity but it has pittfalls. Some say they are bedbound but can use their tablet, their phone and talk, while others need a dark room and no noise, no music, and can't talk. Some manage to go to the washroom while others can't.
The spectrum of housebound is quite wide too, from being able to a few steps around the house, to be able to prepare meals and do light housekeeping but not getting outside of their home, while others manage out for dr visits. Then there are those who are managing out with the help of assistive devices or caregivers but for a limited time, and have simply traded the little energy they have and skip showering, for instance who by strict definition would not qualify for the housebound definition but still would be considered very sick.
There are many, many shades of housebound / bedbound and within these categories, many shades of severity.
He said there are no official definition but from his point of view, a severe patient is a bedbound patient and unable to go out to see a doctor. In my opinion it would fall in the category of 'very severe'.
I thought about the issue a few days ago while answering Dr Jason's questionnaire, what is the definition of bedbound and housebound? In my opinion there are many shades of bedbound and housebound of ME patients. It is used to stratifying severity but it has pittfalls. Some say they are bedbound but can use their tablet, their phone and talk, while others need a dark room and no noise, no music, and can't talk. Some manage to go to the washroom while others can't.
The spectrum of housebound is quite wide too, from being able to a few steps around the house, to be able to prepare meals and do light housekeeping but not getting outside of their home, while others manage out for dr visits. Then there are those who are managing out with the help of assistive devices or caregivers but for a limited time, and have simply traded the little energy they have and skip showering, for instance who by strict definition would not qualify for the housebound definition but still would be considered very sick.
There are many, many shades of housebound / bedbound and within these categories, many shades of severity.
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ScottTriGuy
Stop the harm. Start the research and treatment.
- Messages
- 1,402
- Location
- Toronto, Canada
If I understood correctly, Ron Davis also said that Whitney's gene mutation (that may be implicated in his illness) that they discovered did not come from either parent - it was a random mutation.
Neunistiva
Senior Member
- Messages
- 442
They talked about collecting genetic data from patients. If I remember correctly, they will share it with Dr. Ron Davis. Since they have no funding they can only collect and analyze the data that patients paid themselves to the publicly available genetic testing sites. Right now they support data analysis from 23andme and ancestry.com.
Here's a link with more explanation since I have trouble explaining it clearly. Totally brain fogged.
http://www.nova.edu/nim/research/mecfs-genes.html
Here's a link with more explanation since I have trouble explaining it clearly. Totally brain fogged.
http://www.nova.edu/nim/research/mecfs-genes.html
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
OMF will be making data from the Severely Ill Study available online in about 3 weeks. They are about half done. Per Linda Tannenbaum.
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Ron Davis wants to have a community of researchers sharing data and findings, including negative findings which currently have no place to be shared. Says a negative finding is a finding and can be very important. Says the human genome project used collaboration, sharing and community support to make better progress. He wants to replicate that in CFS research.
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Dr. Unger up now.
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Everybody sees the value of collaboration, so why isn't it happening? What are the barriers?
Don't have common language between researchers, clinicians and patients. Need to
Shortage of resources brings fear and distrust barriers to sharing.
Multi site studies are important. NIH does this with cancer research and are effective.
Must be respective of privacy issues.
Lessons learned from her multisite work.
Clinicians didn't have an effective method and forum to collaborate.
Need to create infrastructure to break down these barriers.
Linda T says Dr. U did bring the clinicians together.
Don't have common language between researchers, clinicians and patients. Need to
Shortage of resources brings fear and distrust barriers to sharing.
Multi site studies are important. NIH does this with cancer research and are effective.
Must be respective of privacy issues.
Lessons learned from her multisite work.
Clinicians didn't have an effective method and forum to collaborate.
Need to create infrastructure to break down these barriers.
Linda T says Dr. U did bring the clinicians together.
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Dr. Whittemore up now.
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Talking about her experience in building collaborative work.
...too fast.
Problem: everyone has small cohorts, is using different measures, etc.
Lost my signal.
...too fast.
Problem: everyone has small cohorts, is using different measures, etc.
Lost my signal.