will be closed after 6 months
will be closed after 6 months
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Having read and carefully considered all criteria and alternate diagnoses, I am reasonably certain that I have ME as per CCC criteria. However, I have only a Fibromyalgia diagnosis. There is no ME specialist in my area who treats this as a bio-medical illness. Once I got my Fibromyalgia diagnosis, any investigative measures stopped other than routine blood tests which they offer to do every time you go in asking for help. I was lucky to have read extensively about OI and to have succeeded in getting a referral to a local cardiologist who is researching OI conditions. She diagnosed me as having Ehlers Danlos Syndrome, but also does not dispute my Fibromyalgia diagnosis which was made originally by a GP in the US after a lot of eliminatory investigations and tests, and confirmed by a local Rheumatologist several years later in a very hurried tender point test. I have more symptoms of ME, in fact nearly all on the list, but many are not severe enough to cause me constant problems. I am mostly bed bound due to pain and exhaustion and have the characteristic PEM symptoms which typically happen several hours after more than my usual low level of exertion, and get still worse within the next 24 hours after that. My OI is keeping me from the quality of life I could reasonably have otherwise. I am accustomed to pain and am only given pain medications at high doses. I will not go to another Rheumatologist for assessment, as the ones nearby were involved with the same people who did the PACE studies and they have a decided bias, plus are known to treat with CBT and GET. I don't need to have it appear on my health records that I have declined these therapies and continue to be bedbound due to resisting treatment. Under the current government programmes, and with future measures promised to cut welfare still further, that could mean severe cuts to my disability benefits which allows me to pay for a part time carer. It is difficult to face life with no possible treatment except for Midodrine to try and raise my blood pressure in order to treat my OI. I am handling the pain pretty well now that I can keep a relatively stable activity level thanks to personal care being provided.
I think madie made a damn good point about ccc and ramsey being different too.@EYAKLLE
I don’t understand this poll. Are you trying to get us to diagnose ourselves and even second guess the doctors who diagnosed us? Are you trying to diagnose us? I don’t get it.
Based on your other posts, it would seem you are determined to define “real true ME”. Perhaps if you could tell us what that is (your definition) this poll would make more sense.
If the point you think you made isn’t understood by your audience, you didn’t make a “damn” good point.I think madie made a damn good point about ccc and ramsey being different too.
If misdiagnoSEEEEEES are happening then yes maybe u need to responsibly empower yourself and find true experts
While his definition may not necessarily be "truer" than others, I think there is a lot of reason to pay attention to it. There is an important continuity and homogeneousness to it. He and his close colleagues spent close to three decades seeing patients (both epidemic and endemic) with this disease in a relatively small geographic area before his description of the disease was published. As far as I am aware, he never described the disease has having a heterogeneous nature, which is in stark contrast to the way CFS is described here in the US, where it's openly admitted that it's probably not just one disease state.Why is his definition truer than anyone elses?