My early symptoms and results of 1995 step-exercise test

More detail added 19.11.15

I would welcome comments on this (the summer school step test results). It is a long time since I was at this summer school and I am pretty rusty on what the findings might mean.

BTW it's just occurred to me that US numerical date notation is different from that in the UK. I have used UK notation. In this we put the day first, then the month, then the year, so for example 1.6.95 means 1st June 1995. For the photos I have used the notation e.g. 030295 which means 3rd February 1995. Hope this solves any confusion!

First are the symptoms that I recorded in the year or so before the exercise test.

Edited extracts from health notes made prior to summer school exercise test

Do not read if squeamish. Details of dog bite may be unpalatable to some, as may some symptoms. Some may also find the dog bite photos too graphic.

From these notes it seems quite clear that I already had ME at the time of the exercise test.

16.3.94 Dental filling

30.3.94 Period 11 days late. Entry suggests that this is unusual

3.7.94 Traumatic life event, resulting in prolonged extreme distress, depression, resignation from job, prolonged over-exertion, poverty, malnutrition and (I think) increase in alcohol intake.

Entry above 30.12.94 et seq - Have also been feverish and weak at times

30.12.94 Bad IBS for 2-3 weeks, with pain for large proportion of day - wake up with it and go to bed with it, sometimes going to bed because of it. Bad for most of today.

31.12.94 Pain for much of day but a little better.

Think I last used OP (organophosphate - dichlorvos) house flea spray in 1995 (not clear whether before and/or after summer school exercise test)

1.1.95 “Woke up with no pain!” IBS in evening I think. (Lower abd/groin pain, presumably)

2.1.95 Mild IBS but spells without (none in morning)

3.1.95 Don’t think I had bad IBS

4.1.95 “No IBS!”

5.1.95 Dull pain quite high on right-hand side (abdomen) “Liver?”

2.2.95 Bitten badly on calf by dog. View attachment 10066 View attachment 10067 View attachment 10068 View attachment 10069 View attachment 10070 Was wearing long thick socks, thick legging-type trousers and other thick trousers outside these. One wound bleeding through dressing an hour later. A set of toothmarks which had been blue was now dark red. Area had gone numb on surface but throbbing inside. Dog had taken small chunk of skin/flesh out of leg.

(NB made copious notes and photographed injury to aid prosecution of dog’s owners, which never happened, due to incorrect legal advice)

3.2.95 ‘Chunkless’ bit of leg almost stopped bleeding/weeping. Small amount of new skin forming. Swelling gone down. Large area of bruising around wounds.

6.2.95 ‘Hole’ has leaked through to bandage again. Area around it yellow and numb. All still tender but blue areas feel fairly normal when touched.

7.2.95 Hole about half healed over (pink surface). Rest still red and weeping. Lot of bruising now yellow. Still numb around wounds, starting to itch.

8.2.95 Hole still making red patch on lint. Healing continuing. Feeling starting to come back.

9.2.95 Hole still weeping (red). Most of bruising now yellow. Blue around edges.

10.2.95 For first time ‘hole’ did not stick to dressing when changing, but had wept red as usual. Broad blue-green strip down to ankle-bone not seen before (NB possibly due to herb poultice).

13.2.95 A4 sheet about solicitor appointment re dog attack: could not ride bike for at least 2 weeks...had to spend about an hour daily for 2 weeks changing dressing...This was only 2nd or 3rd cycle ride I had made since childhood - was trying to get fit...(bolding added later)

14.2.95 Pale green pus still exuding from hole. Bruising fading well. Toothmarks healing well (good scab)

16.2.95 Bleeding semi-circle at edge of hole.

17.2.95 Still oozing blood and greenish pus (NB did not use herb poultice yesterday so less green but still green-tinged)

23.2.95 Scab has come off toothmarks. Slight bleeding, ditto from hole (now almost closed)

Numb (presumably wound site) for over a week. Unable to ride bike for over 2 weeks as wound weeping and sticking to dressings. Having to change dressing once/twice a day. Tetanus jab. (recent bolding in case this is significant)

27.2.95 started Colofac (mebeverine) 6 a day

28.2.95 Bad IBS, esp pm, + headache and red face

3.3.95 Forgot lunchtime Colofac; IBS in evening

5.3.95 IBS in evening; evening Colofac taken v. late

6.3.95 Took Colofac but IBS led to early night.

8.3.95 Dizziness for few hours in evening; unable to see well or balance without concentrating

11.3.95 a.m. (Mild pain/feeling of tightness or pressure on right side just left of armpit) Slight twinge in mid-abdomen, on left, around same time. Hungry and light-headed.

21.3.95 Started taking Colofac again following several bad days (so had presumably stopped)

22.3.95 Diarrhoea a.m. No pain. Dizziness 2000 while having dinner. Not too long-lasting. Other note (time unclear) “Bit light-headed earlier, then sudden onset in evening. Upper back pain as before. Eyes damp and shining. Involuntary frowning. Feel high up! Feeling colder than should be, I think, then hot spell. ‘Stitch’ on left side. Light and sound sensed more intensely. Wearing off a bit after about 2 hours. Cold again.

Apparent notes for a medical appointment around March 1995, I think - definitely after dog bite:

“Last 2 months approx symptoms very persistent, now every day. Unable to concentrate, difficulty staying awake. Stools generally amorphous or flaky or ‘spray’. Varying colour. No normal stools for some time (months?). Sometimes have to pass water every 5 mins for an hour. Sometimes mild stabbing pain under navel. Also seem to have recurrent fevers with night sweats. Aural misinterpretation, seeing things not there.”

(continuation of same list?) “Dizzy spells. Staggering, feverish feeling, slight nausea, cheeks feel hot esp. at top towards eyes. Very hard to focus. Hot feeling between sides of nose and eyes. Twinges in back like I had more persistently once on acid (LSD, not taken for years at time of writing). Weakness in legs, feeling of nasal congestion. (Urine production seems to be stimulated.) (Hunger)" (These are in brackets in notes.)

Notes for a GP appointment in 1995, date unknown but on or after 28.4.95

Pain in lower abdomen/groin

Diarrhoea (sometimes with blood)


Tired eyes, blurred vision, fatigue

Bleeding haemorrhoids

Perceptual problems (vision, sound)






Lightheadedness, dizziness, palpitations (esp. at night)

Recurrent fever (including night sweats) (NB may not have measured temperature and may just be referring to perception)

Excessive sweating

Weakness in limbs, esp. after defecation

Frequent urination

Pain on right side in mid-abdomen (Jan and April) Feeling like swollen organ which moved when I did

Periods becoming lighter and shorter

Hunger, thirst

Pain/tightness just left of right armpit (rare) Have noted ‘symptom of Colofac reaction?’) but now know that it was probably axillary lymph node

Mild stabbing pain below navel

25.4.95 Bruised feeling across upper abdomen

26.4.95 Still pain and movement on right side of upper abdomen.

26.4.95 After dash to defecate after usual discomfort/pain, produced very loose runny stools and loo water heavily tinged with red. Pulse 100 @ 2255. Very tired, esp. eyes (as often lately)

28.4.95 Yellow vomit


Not sure how to interpret the exercise test, but yes I would agree that it looks like the ME started in '94 not '95.
Possibly 1994, but onset was so gradual it's hard to tell, and I don't have enough records from 1994 (although I don't think I have checked my medical records - must do that). It seems to be a case of IBS gradually merging into ME. I also had brief episodes of ME-like symptoms (lasting maybe a week or a month) much earlier, including one in adolescence, although that was just extreme sleepiness and may have been due to hormonal changes (or maybe I had a tick bite...?).

Professor Pinching asked me whether I had had earlier ME-like episodes so seemed to consider this significant.

I tend to say 1995 as symptoms were more pervasive by then - the typical bewildering list that shouts 'Hypochondria!' to doctors.

I wasn't diagnosed until 1999 when I finally realised that my symptoms were apparently typical of ME and asked for a diagnosis.
Trying to edit my last message but the box appears too far down the page and I can't see a 'save changes' box. It was actually 1999 - not 1995 - when I asked for, and got, a diagnosis, so I had been ill for at least 4 years.

EDIT - I've managed to do it now!

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