taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
my first study choice would be OI
Dysautonomia/ Orthostatic Intollerance
I think its essential we have more studies done into this as after all one study showed that was it 98%? of ME/CFS patients on testing had some form of this and this is a quite testable problem that many of us have which is going untested and hence then untreated.
Specifically.. how many of us have OI/Dysautonomia and what forms. This should include all 5 noted forms found in this illness which Dr David Bell has written about (including abnormal narrowing of the pulse pressure where the gap between the systolic and dystolic is abnormal).
...............
Heritary Studies
I'd like to see some family case studies done on incidence of ME/CFS within families which have this. We need the question answered ..is there a 25% risk that this illness is passed on? If not what is the risk amount if one of ones parents have or have had this illness?. (the 25% comes from what Ive heard coming from a ME specialist observations of his patients).
..
I'd also like to see a family case study of several families in which have several affected members (at least one very severe) to compare if there is anything different in these to other families. There are some badly affected families out there and as far as I know no family study has been ever done.
............
I strongly also think that more studies need to be done on the very severe group of us (the bedbound, housebound, wheelchair using patients).
Maybe a study on the severe complications found in the severe ME group.. most in this group have some form of severe complication whether its paralyses at times or something unusual showing up on tests. So why don't the unusual tests (past and present) of this severe group all be pooled together and studied for incidence rates etc. How common is the bouts of paralyses in severe ME? How common is it for the bowel (peristalisis) to fail to the point they can non longer go without meds or laxatives? How common is seizures or unconscious in this subgroup?
Lets find out all those things which would help have this illness being viewed as more serious so I want to see the serious complications of the severe 25% subgroup of us studied .. "the worst of the worst study". The results from such a study I suspect woudl be quite shocking. (this could also be turned into a long term study to find out how this group ends up faring ..do those with severe ME get a severly shortened life span?).
I know this isn't written like a submission but the above things are what I think should be priorities with where things are at today.
..........
umm a study into what things make our condition worst could also be very helpful to things. An general negative impact study (done only those who have CCC defined ME/CFS, I'd hate to see an impact study turned into other psych study using a poor CFS patient group)
eg how impacts of being forced to stay working while sick have affected our condition, impacts of GET, impacts of dismissal by doctors, being made worst by lack of support services or living in a mold house? etc What things are negatively affecting ie making our condition worst in our patient group? Are we made worst by various things?
we all know things impact our illness and can put us at a worst baseline but has this been actually generally studied yet? maybe we need some scientific evidence for others to support what we already know of what kinds of things being done to us are being harmful to us.
I don't know about others here but I certainly could do with at times an scientific study which helps me back up to others things I'm saying re things which have impacted me and made my illness worst eg Centrelink forcing me to try to work crashed me and put me at a worst baseline to which I haven't recovered from 5? years later... are others being made worst by government depts.? Is it important to get the negative impacts, scientifically known? (such a study done by a non biased person could be very useful).
Dysautonomia/ Orthostatic Intollerance
I think its essential we have more studies done into this as after all one study showed that was it 98%? of ME/CFS patients on testing had some form of this and this is a quite testable problem that many of us have which is going untested and hence then untreated.
Specifically.. how many of us have OI/Dysautonomia and what forms. This should include all 5 noted forms found in this illness which Dr David Bell has written about (including abnormal narrowing of the pulse pressure where the gap between the systolic and dystolic is abnormal).
...............
Heritary Studies
I'd like to see some family case studies done on incidence of ME/CFS within families which have this. We need the question answered ..is there a 25% risk that this illness is passed on? If not what is the risk amount if one of ones parents have or have had this illness?. (the 25% comes from what Ive heard coming from a ME specialist observations of his patients).
..
I'd also like to see a family case study of several families in which have several affected members (at least one very severe) to compare if there is anything different in these to other families. There are some badly affected families out there and as far as I know no family study has been ever done.
............
I strongly also think that more studies need to be done on the very severe group of us (the bedbound, housebound, wheelchair using patients).
Maybe a study on the severe complications found in the severe ME group.. most in this group have some form of severe complication whether its paralyses at times or something unusual showing up on tests. So why don't the unusual tests (past and present) of this severe group all be pooled together and studied for incidence rates etc. How common is the bouts of paralyses in severe ME? How common is it for the bowel (peristalisis) to fail to the point they can non longer go without meds or laxatives? How common is seizures or unconscious in this subgroup?
Lets find out all those things which would help have this illness being viewed as more serious so I want to see the serious complications of the severe 25% subgroup of us studied .. "the worst of the worst study". The results from such a study I suspect woudl be quite shocking. (this could also be turned into a long term study to find out how this group ends up faring ..do those with severe ME get a severly shortened life span?).
I know this isn't written like a submission but the above things are what I think should be priorities with where things are at today.
..........
umm a study into what things make our condition worst could also be very helpful to things. An general negative impact study (done only those who have CCC defined ME/CFS, I'd hate to see an impact study turned into other psych study using a poor CFS patient group)
eg how impacts of being forced to stay working while sick have affected our condition, impacts of GET, impacts of dismissal by doctors, being made worst by lack of support services or living in a mold house? etc What things are negatively affecting ie making our condition worst in our patient group? Are we made worst by various things?
we all know things impact our illness and can put us at a worst baseline but has this been actually generally studied yet? maybe we need some scientific evidence for others to support what we already know of what kinds of things being done to us are being harmful to us.
I don't know about others here but I certainly could do with at times an scientific study which helps me back up to others things I'm saying re things which have impacted me and made my illness worst eg Centrelink forcing me to try to work crashed me and put me at a worst baseline to which I haven't recovered from 5? years later... are others being made worst by government depts.? Is it important to get the negative impacts, scientifically known? (such a study done by a non biased person could be very useful).
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