A short sad history of ME/CFS

cepheus

ash4becks wrote: »

who dignosed you in the end , i have a rhemy appointment was going to be next week but they put me down for the wrong clinc grrr now not till next month

Rheumy specialists diagnosed the FM, this is far easier than ME because of the definition (pain in specific points when pressure is applied, perhaps mixed with history).

ME in contrast is a real dumping ground, some doctors and specialists even confused ME with a form of depression in those days, depends very much on who you see. One specialist thought I was even displaying early stages of MS although he also told me not to exercise after seeing my neck (this was before my whiplash accident which led to FM) and that was the best advice I received over 10 years of ME.

Whether an 'official' diagnosis really means you have what they say is something else.

I prefer the theory that viruses can cause damage to the endocrine system, particularly the hypothalamus in the brain which indirectly governs a wide range of functions. Exactly how the hypothalamus is affected determines the symptoms in a wide variety of ways.

Indie_Kid

clouty wrote: »

Doctors and specialists I have seen have belittled my experience, because of the current received wisdom about this disease.

How sad. I thought doctors and specialists were meant to be non-judgemental?

clouty

I hope you never have to experience the attitude of most doctors to patients presenting with symptoms of ME.

purplejac

i have been attending the hospital for 4years and still have not got a diagnosis they say it could be ms or me they also found lyme disease and was treated with 4weeks of intravenous antibiotics and was told this could have caused my problems ive had several lumber puctures and several mri and cat scans im now waiting till next year for my next appt to see what the last scan report says which was supposed to be a contact mri but they didnt bother doing that after the mri they called a doc while i was in the machine and then said to me were not doing the contrast one now and left it at that so back to limbo land again till next year

clouty

Lyme disease is a common co-morbid infection with ME. Purplejack, I'm sorry you have had such a rocky road. I hope you are at least finding ways to cope with it all. We are so often left in limbo. It's not for no reason they term us "patients" 'cause that is exactly what we need to have lol.

Because there has been a dearth of medical research into ME, none funded publicly at all, and that that has found private funding has been ignored, there are a vast army of ME patients left without diagnosis and treatment.

Factoid for tonight: there are Medical Research Council files from 1988 about ME/CFS that have been locked up, exempt from the freedom of information act, until 2071. No that is not a typo, I meant 2071. See here:
nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=-5475665&CATLN=7&accessmethod=5 and here: meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

Again, add the usual prefix after pasting into your browser window.

clouty

One of the points I was trying to make with my original post is that the label ME/CFS is applied to many different conditions. The diagnostic tools used by the NHS are so weak that many people with ME are not diagnosed, and many people who have other conditions are labeled as having ME/CFS.

The problem is with the definition used, as the Fukuda, Oxford and CDC 2005 all exclude the use of the biomedical tests that would lead to a positive diagnosis of ME.

So you may be diagnosed with ME, do the treatment (GET, CBT and Lightning Process®) and find it helps. Which is great, don't get me wrong. I would love it if the whole world was well and happy. I really would.

But if you have CCC ME, a real biological neuro-immune disease, then these sorts of treatments are positively harmful. A friend of mine was treated four years ago at the Burgess Hill ME/CFS clinic, he tried really hard to follow the course, after all we all want to get better, but he has yet, four years later, to get back to the state he was in before he started the treatment. He was not well before going to the clinic, but he was a whole lot worse after it, and still is.

Sophia Mirza was sectioned, and put through a regime of psychological and physical training, that put her in the relapse that eventually killed her. http://en.wikipedia.org/wiki/Sophia_Mirza

Ean Proctor was taken from his parents, put in a mental home, where they believed his paralysis was psychological, so they threw him in the swimming pool and he sunk. He had to be pulled out in a hurry. You couldn't make this stuff up. http://www.youtube.com/watch?v=OJmis85FM4s


This situation is appalling, we need correct diagnostic methods to be used, otherwise how can the doctors begin to treat us correctly?

The politics are getting in the way of effective research, diagnosis and treatment. http://www.youtube.com/watch?v=y7VdXX9P58w

This is about the health of you and your family, as well as me and mine.

cepheus

Clouty

Excellent post, with particularly pertinent points, glad to see some people can still think and reference on these boards.

oerganix

idvi wrote: »

i dont think this is good advice

you should never self diagnose, whatever the problem is - at all.

if its not m.e/fibro and its something else, but you are convinced its m.e/fibro then your health will suffer because the problem wont be treated

there is no positive diagnostic tool for m.e/fibro - its a diagnosis by elimination deliberately for the safety of the patient. they dont want to go and say everyone has it, when its all sorts of other problems instead

they still dont know much about it either, so for you to assume you know it all makes it worse

Once you've had all the other possible conditions eliminated by the tests available, and clinicians still can't or won't come up with a diagnosis, the only thing left IS self diagnosis. It's not like clinicians are never wrong either.

Like another poster said, it really depends on who you get for a doctor. Some are more open minded and up to date on what they know. If you get one of the other kind, you are left to diagnose yourself, knowing you don't have any of the other "treatable" illnesses.

In fact, many patients DO know a great deal more about ME/CFS than the average doctor. And some of the self diagnosers ARE doctors with ME/CFS who couldn't get a diagnosis from their peers.

Bottom line, we all have to take responsibility for our own decisions and I certainly respect those who choose to just sit back and wait for some "authority figure" to diagnose them, but I equally respect those who trust their own intelligence and their own research, added to the lab tests that tell them they don't have something else, to come up with their own diagnosis. The average online patient knows a lot more about this illness than the average doctor OR researcher.

After I diagnosed myself, I encountered one of the two docs who actually have believed me and believed in the existence of ME/CFS. They both confirmed my diagnosis. And they both said, but then what? There is no treatment. This misinformation comes from the CDC and the NHS.

There ARE treatments, not cures, but the political powers that control treatment options do not want to go there. It's much more economical to keep telling the few who are interested that it's a mental disorder...give them Prozac, some exercise and some talk therapy and make them go back to work. Or die quietly in some darkened room, or commit suicide or get one of the cancers so common to ME/CFS, at which time one can be diagnosed with cancer, but the viral cause of the cancer is still ignored.

Sure, get all the tests you can to eliminate what ever else it could be, but when you 'know' what it isn't, you are free to diagnose yourself.

Trialia

sunnyone wrote: »

I was fine until my accident, as are most people with HMS at your age unless there are other factors.

Or, you know, not. You must be incredibly lucky, because I am 24, I have a diagnosis of HMS/HEDS - and I walk with a cane, cannot take a step without pain radiating through my legs, can't get out of bed during my period because my hips subluxate every moment, all my joints are increasingly unstable and I wind up in A&E three times a year on average for relocations/reductions that I can't do myself. I am on morphine, not for the fibromyalgia but for the arthralgia resulting from HMS. I also have secondary fibromyalgia which was caused by HMS.

Don't judge everyone by your lucky standards. HEDS/HMS has this thing - with parent and child who have it, it tends to be worse in the child, and worse in their child - and I have seen that in all the families I know who are affected by it.

SingleSue

So true Trialia, it is only really now it has got to the stage where I need to use a stick and having major pain but my eldest son however, is already almost at that stage at age 16.

I did have problems earlier on in my life but compared to eldest, mine were a lot less than he has already had to contend with.