what about younger children who've developed ME/CFS, mine were both only 8yrs old, to young for gcse, A levels etcQUOTE=Countrygirl;37465]Hi Kim and everyone,
After working through the survey again I have the following suggestions.
I think we need to ask age of onset or the answers to the educational level question could be misleading
Question about educational level:
At what age did you become ill?
What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.
I am still concerned about the
PAST questions. We cannot add more columns, I guess, but perhaps it could be refined by asking another question about the trend of symptoms to improve/worsen.
For example:
Have your immune/neurological/digestive/sensitivities/sleep/cogntive/cardiac problems worsened, improved or stayed the same over the course of the illness? This may help to tease out the nature of the evolution of the illness over time and possible stages.
Also would it be helpful to say what time frame '
current' refers to' ? Given that the symptoms of this illness fluctuate, I think we do need to qualify the words 'current' and 'past' For example, up to very recently, I experienced severe breathlessness, but it has resolved itself, for the moment, since Christmas. It could re-occur at any time. So is this current or past? So many of our problems are cyclical, so I think we do need to define 'current' eg.
Has it been a regular or prominent symptom in the last year?
Would it be possible to be able to tick both
current and
past boxes? That way it would be possible to see whether a symptom is new. It would again give an indication of the evolution of the symptoms and whether the condition could be divided into stages.
For Q.25 could rheumatoid arthritis be added? There has been suggestions that this could be caued by a retrovirus? Also hyper-reflexia because of its association with M.E. Dementia was also mentioned by Dr Bateman - I guess we can all tick that box to some level.
There is another thought. Some of us have spent years with very low BP and POTS, but some have now developed high BP. This may be our genes kicking in, but it would be interesting to see how many of us have developed hypertension. Cheney said no more than 2%. Could we check that? eg. for 29 years I have had very low BP down to 60/40. Now, during the last months, it has rocketed to nearly230/120. So a hypertensive question somewhere, perhaps.....what do you think?
I have drawn up a poll to test for transmission between genetic and non-genetic household members. After looking at the questions in the survey, I would just like to suggest a couple of things. Could there be a column added for non-related (non-spouse) household members? I have in mind au pairs, lodgers etc. I know of some who have developed the illness when staying in a home where one person has the condition. I might be useful to know. the time frame would be useful, but it is getting rather long. Also, one thing that I believe is important, so that the results do not become scewed, is to ask the question
'Do you live alone?'
One more, what about family pets who have developed the illness? My vet told me that my dog, she was sure, had developed M.E. from me. It was triggered by a vaccination - her third booster. I have since heard a documentary which claimed that a number of dogs develop such an illness after their third (and unnecessary) booster vaccination.
Another stray thought...a number of us who were brought up in the 50s had contact with polio. I developed it in 1955 and suffered from muscle weakness ever after, although the paralysis was only temporary. This could be quite important to ask the over-50s if they had exposure to polio because of the similarities to post-polio syndrome.
Phew!
Sorry about the looong block of print
:tear:[/QUOTE]