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helen-louise
baratron
baratron
and more about ME/CFS
M.E. is an illness. M.E. stands for Myalgic Encephalomyelitis - which is a bit of a mouthful, but basically means muscle ("myalgic") and head ("encephalitic") symptoms. M.E. is also known as Post-Viral Fatigue Syndrome (PVFS), because it often follows on from a viral infection. Also known as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

As its name suggests, M.E. mainly affects the muscles and the head. Muscle symptoms include severe fatigue upon exercise, muscle pain and spasms, influenza-like malaise, clumsiness, poor memory, concentration and balance, non-refreshing sleep, sore throats, enlarged glands, and joint pains. Head symptoms include headaches, dizziness, "swimmy" feelings, and perhaps the most difficult to handle, loss of concentration and short-term memory.

These are not the only symptoms experienced in M.E. Sufferers will often feel "ill all over", and experience many flu-like symptoms; nausea, shivering, fever, and generally over-react to heat and cold. Some unfortunate sufferers may be in unremitting pain.

Digestive problems are common; constipation or diarrhoea, gas bloating and bowel pain. Alcohol intolerance may also occur.

Depression and emotional problems are often a part of M.E, but it is important to realise that these are a symptom of the illness, and not its cause. Some sufferers are very emotionally volatile and unpredictable - they may get angry or depressed for no apparent reason, or even cry at the slightest upset. This may be due to the illness affecting the nervous system.
- Edited from mehelpinfo.users.btopenworld.com.

Great. A perfect description of me, associated with an illness which many doctors still don't believe exists, and which has no cure. Now I have to wait for an appointment to see my doctor, because although I could get an emergency appointment tomorrow to see someone, they won't have time in a 10-minute appointment to read my entire file. As my many ailments have been going on for months or years, it's important for them to see the history. And hey, if it is ME, waiting a couple of weeks to see someone isn't going to make any difference.

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sashajwolf From: sashajwolf Date: 4th February 2003 23:51 (UTC) (Link)
That's what triggered my IBS. If that's what you've got, I'd expect your medical history to include a distinct viral illness, which generally has to be quite severe (gastric flu or glandular fever are favourites), before which you had none of the symptoms and after which they gradually started to develop. Alternatively, exposure to large quantities of organophosphates seems to trigger it in some people. Do you recall either of those happening shortly before you first became ill?

The theory that a structured exercise programme can cure ME is gaining ground again at the moment; be very careful if that's what you're advised to do, because a lot of sufferers find their symptoms are made worse by it. What worked for me was three months of complete bed rest followed by very gradual rehabilitation, with no exercise more strenuous than walking. When I had recovered, my doctor told me never to attempt a serious cardio workout again. I believe I almost relapsed last year when I foolishly thought enough time had passed to give it another go.

Bed rest works less well as a remedy the later a person is diagnosed, but it can still lead to a partial recovery. I knew a woman who wasn't diagnosed for about thirteen years, who went from being housebound to being able to take a part-time job as a deacon in the Church of England.
baratron From: baratron Date: 5th February 2003 16:23 (UTC) (Link)
Hmm. I talked to my mum this evening, and she insists that my illness(es) only started after I had my BCG jab at the age of 13 or so. This fits with the timeframe I remember, too. Before that, I had all the ordinary childhood diseases, but not really much worse than anyone else. After having that injection, I suddenly developed allergies, was diagnosed with asthma, and the chronic pain and muscle weakness started. I would fall asleep in class, and just felt awful for over a year. I had cold after cold after cold. And I couldn't stand up for long or walk far - going shopping on Saturday meant I had to sleep most of Sunday.

Something went wrong with my BCG - we know this because it didn't swell up and go pus-sy the way it's supposed to. (When Richard and I watched that smallpox programme part of the storyline involved a boy's vaccination site not swelling up, and he ended up dying from smallpox because the vaccine hadn't taken properly. I mentioned my BCG to Richard then). I was supposed to go and have a test to see whether it had taken, and if not have it re-done, but afterwards I was just ill constantly for months, with one cold or flu after another, and you're not supposed to have vaccinations done if you're already ill.

What is very possible is that what I had then was actually ME. My mum says that 12 years ago there was a terrible stigma attached to the illness - it was still called "yuppie flu", and says this is why my doctor then didn't want to diagnose it. I did eventually get better - I was fairly healthy by my standards during my A-levels, until just before I had to take the exams, when I was forced into an aerobics class which put me into so much pain that I spent about a week flat on my back. After that, I went for physiotherapy at a very good private practice, because I was due to take the exams in 6 weeks and was in too much pain to study or concentrate, and several interesting things came up, such as me having a twisted spine (scoliosis) and an undiagnosed broken ankle which had long since set wrongly. (That was also a result of a school PE lesson, when we were forced to do a gymnastics move which I told the teacher I knew I couldn't do, she forced me to do it anyway and I fell several feet to the ground, injuring my ankle in the process. I would have injured more if I hadn't done some judo lessons and been taught how to break my fall. But I digress).

I got ill again when I went to university, but I'm sure I wasn't ill all the time then, just depressed. Being ill all the time only started after I had glandular fever. I was exceedingly stressed at that time - my dear boyfriend dumped me when I was too ill even to speak, I'd just started a PhD which wasn't going at all like I'd planned, and I was president of the student union. I rushed back to college several months before I should have done because I was so worried about everything, and never really got better. Depression came first, with the loss of short-term memory and concentration they're ascribing to ME, and the physical problems followed more slowly.
sashajwolf From: sashajwolf Date: 6th February 2003 04:30 (UTC) (Link)
Hmm. On the one hand, that does mostly read like the history of someone with ME brought on by an immunisation that, for whatever reason, their immune system reacted to abnormally. On the other hand, if that was the cause, I'd actually expect *more* of a reaction at the site of the injection rather than less, because one of the hallmarks of ME is that the immune system becomes overstimulated.

The glandular fever episode would make sense as an ME relapse that just happened to manifest first through a recurrence/intensification of your depression and then physically. It would be unusual as a *first* manifestation of ME, because depression is not normally a presenting symptom, i.e. it is not normally the first thing that people notice or consult a doctor about. This is one of the points that is used in differential diagnosis of ME.

If what you have really is ME, then my guess would be that the sequence of events went something like this: you had an atypical reaction to the BCG, but it wasn't the BCG itself that triggered the ME. Rather, I'd guess that the BCG left your immune system too stressed to cope with the colds/flus that came shortly afterwards, meaning that those viruses then triggered the ME.

ME really was terribly badly understood even quite recently, especially in children. About six years ago there was a girl in her early teens at my old church who had it, and her GP was absolutely adamant that she couldn't have it because "children don't get ME". This culminated in the incident where he refused her a medical note to get out of swimming and advised her school's swimming instructor that she was faking it when she said her muscles hurt too much to swim. It took being rescued from the pool by the lifeguard before the school finally believed her.
baratron From: baratron Date: 6th February 2003 16:50 (UTC) (Link)

Meep!

Damnit! By the time I went to the doctor with depression, I had already been living with chronic pain for a couple of years. You see, the chronic pain stuff was dealt with by my old GP at home in Camberley, whereas the depression was dealt with by my new GP at college. If I'd seen my old GP, she would have made the connection, I'm sure, but as it was...

The college doctors had my medical history there for them to see (in fact, my current GP has my notes going all the way back to when I was born, so I know that college must have had them), and they never asked about the pain, and it didn't seem relevant. I was much less educated about health problems than I am now.

In my second year at university, I kept falling asleep in classes again, as I had done at school, and was terribly worried about it, because (a) I was missing stuff, (b) it's dangerous to be potentially collapsing in a chemistry lab situation. I brought this up to my pile-of-shit GP then - that I was falling asleep in class despite sleeping for sometimes as long as 12 hours a night, I was exhausted all the time, putting on weight despite eating fairly sensibly (I was in a catered hall with good, healthy food), and had cold after cold after cold. And she put me on fucking sleeping tablets!! Which did nothing... I couldn't get to sleep until 2 or 3 in the morning whatever I did, and then I'd need to sleep until the afternoon. I remember one night taking 4 times the dosage on the packet, because I needed to sleep so badly I didn't care anymore - every muscle in my body ached and I was in so much pain, but I just couldn't get my brain to switch over.

Oh yes, to say nothing of the fact that I couldn't be depressed because I was sleeping too much and putting on weight, whereas depressed people sleep too little and lose weight - but I think that rant's in the link I gave. I would sue that god-damned GP if I had the energy to :(
lilfurrydan From: lilfurrydan Date: 5th February 2003 04:56 (UTC) (Link)
I've a friend (I'll call her by her initial, E) who has had ME since she was 8 or 9 (you've met her, in fact). She'll be 26 this year. It's rare for ME sufferers not to make a full recovery in their mid-teens. That list of symptoms also seems to me (and of course, I'm not a doctor, but from my experience with E to be complete garbage. For a start, ME is not the same thing as CFS, SAD or yuppie flu. None of the symptoms listed are appropriate for E; she describes it as being difficult - almost painful - to think, as though your intelligence has been artificially reduced.

The reason I mention that is that ME is such a little-understood disease and the symptoms can vary so wildly from person to person (E's mother also has ME, and a completely different set of symptoms; whilst E herself can be laid low for days, even weeks at a time, and not be able to move from the sofa, E's mother doesn't ever seem to suffer "that bad") that it's not very much use to have a set of symptoms at all. Most of the ones listed above seem to have been brought on by various treatments that E has been prescribed over the years.The latest thing she's having to do is a complete diet overhaul - last I spoke to her she was on a gluten-free, lactose-free, wheat-free and presumably taste-free diet. I'm pretty sure you've no wish to limit what foods you can eat even more, but I don't remember you ever trying to be gluten-free. Eating gluten - if you're allergic to it - could certainly produce 75% of the symptoms you've quoted above.

If you like, I can contact E and get a list of contacts from the ME society from her. They keep a list of doctors who are "ME-friendly" and who ought to be able to advise you better if you think it's what you have.
baratron From: baratron Date: 5th February 2003 11:48 (UTC) (Link)

According to what I've read, CFS is a more general term than ME. You can have CFS but not have ME, but if you have ME you have CFS. Does that sound right to you?

she describes it as being difficult - almost painful - to think, as though your intelligence has been artificially reduced.

!! That's exactly how I've described my depression. And my doctors and psych people have always been surprised by that. On the worst days I feel like 40 or 50 points have been knocked off my IQ.

Perhaps I should have some more allergy tests done. Testing for food allergies is a bit more complicated than nasal allergies, but there is at least one method that's fairly reliable. Going gluten-free would be quite expensive to do as a trial, as well as driving me insane, so it would be a better idea to find out first whether it would do me any good.
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