Purple
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Does anyone know what percentage of people with ME/CFS are children? And have there been any studies on this? I can't find any reliable info.
How many sufferers are children?
- Thread starter Purple
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The BPSers seem to be the only group particularly interested in this ... which unfortunately only results in statistics for children with fatigue.
I cant see any statistics on this illness in terms of population groups being particularly accurate, especially in the UK, where persistant fatigue without an obvious explanation seems all that is necessary for a GP to say you have CFS/ME. People also seem to self diagnose it a lot as well, until there are better methods of diagnosis and tighter diagnostic guidelines are implemented and used by the average doc.
The figure that is always mentioned in the UK, ie 250,000 cfs/me sufferers always appeared a stupidly high estimate to me. Of a population of approx 63million, it means roughly 1 out of every 250 people has in the UK. Even more common than that if you look at the main demographics that it hits. Most likely those figures include anyone who just has a "fatigue" type illness, which of course means that the figures themselves are largely useless as there is no specificity to them.
The figure that is always mentioned in the UK, ie 250,000 cfs/me sufferers always appeared a stupidly high estimate to me. Of a population of approx 63million, it means roughly 1 out of every 250 people has in the UK. Even more common than that if you look at the main demographics that it hits. Most likely those figures include anyone who just has a "fatigue" type illness, which of course means that the figures themselves are largely useless as there is no specificity to them.
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My neurologist told me that the children's hospital he visits is full of cfs patients.
taniaaust1
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I dont think there has been any proper study on how many children get ME/CFS. Its another huge gap in our research and something which if known could possibly help our advocacy.
I do remember one well known ME specialist said that if you have ME/CFS, from his observations of his patients, there is a 25% chance of having a child with it. (thou by that I dont know if he meant that your child would get it as a child?). Kind of a worrisome statistic anyway.
I do remember one well known ME specialist said that if you have ME/CFS, from his observations of his patients, there is a 25% chance of having a child with it. (thou by that I dont know if he meant that your child would get it as a child?). Kind of a worrisome statistic anyway.
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I should have also mentioned that the neurologist didn't seem particularly perturbed by seeing so many cfs patients in the children's hospital. He told me that CFS was a benign condition and self-limiting. Although he examined me thoroughly and listened carefully to what I experienced with this illness, he didn't seem to regard CFS as a serious condition. Nobody seems to question how a young, very fit person can suddenly be quite incapacitated with symptoms that don't fully resolve. They can have many such patients pass through their door like this and yet the majority of these doctors don't ever seem to wonder why. They make firm statements about illnesses based on no evidence.
vli - I messaged you.
vli - I messaged you.
taniaaust1
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If people don't drop dead on the street, then it's not a serious medical condition!
Even if someone did drop dead on the street from this.. I think they would then just put it down to another cause.
taniaaust1
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Yes I did drop in the street tania quietly in a doorway - amazed at the people who ignored - presumably thought just another drunk.
I once had a serious incident where I collapsed while watching a parade (due to the POTS.. I hadnt factored in the heat from the crowd affecting me even more then usual).. in the middle of the crowd and was about to get trampled as I was among feet and I couldnt get up. People saw the trouble I was in and went to get the police to help me. They got ignored, the police refused to come to my aid and respond.. I assume they thought I was a drunk. I havent been to watch a parade since (my boyfriend says he will never take me to one again due to this) and I wish people had thought to ask for those officers names so I could of reported them for not helping someone who was in a dangerous situation. In the end strangers (and my boyfriend) had to basically carry me out of there pushing throu the crowd.. it ended up taking my boyfriend and strangers probably 15-20mins to get me out of the danger (that was the time AFTER it took for them to go to police and get rejected) and get me off the street (I was also iced down with the ice in their drinks) and into a shop to which I could lay on the floor and recover. (the whole thing was scary..I really did think I was going to be trampled).
I went to so many doctors trying to get the OI side of things (the POTS treated) and was ignored for 5 years of various serious incidents (last serious incident was last year when I collapsed int he middle of a roadway and my support worker had to stop cars hitting me as I couldnt get back up and walk).. before I found a doctor who listened and started to treat it (thou still not fully successfully so my life is still restricted today due to the POTS..eg no parades for me). It shocks me how something which is endangering our lives at times is usually completely ignored by those supposed to help. Due to the POTS, I still arent safe to leave my house alone (and stupidly cant get regular saline IVs so I can be able to be leading a better life)..
Hip
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People can have all the symptoms of ME/CFS, but the severity of these symptoms can vary greatly from one person to the next. One way to quantify the symptom severity of an ME/CFS patient is to determine where the patients sits on the Karnofsky scale. The Karnofsky scale is as follows:
Karnofsky Scale
100 Able to work. Normal; No complaints; No evidence of disease.
90 Able to work. Able to carry on normal activity; Minor symptoms.
80 Able to work. Normal activity with effort; Some symptoms.
70 Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 Disabled; dependent. Requires occasional assistance; cares for most needs.
50 Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 Severely disabled; dependent. Requires special care and assistance.
30 Severely disabled. Hospitalized, death not imminent.
20 Very sick. Active supportive treatment needed.
10 Fatal processes are rapidly progressing.
It is quite clear that the figure you settle on for the number of people with ME/CFS in any given nation is going vary depending on what level of symptom severity is required before you include them in your ME/CFS statistics.
If your statistics were to include people even with very mild ME/CFS — people at the 90 point level on the Karnofsky scale — I imagine your would have an awful lot more people classed as ME/CFS patients than if you chose say the 70 point level on the Karnofsky scale as your threshold for having ME/CFS.