365 day Sleep Log ~ My Results

Over the past year I have collected sleep log data in order to achieve a finer sense of what influences how I feel the next day* as a person with ME/CFS in terms of variables relating to qualify of (restful/restorative) sleep and have now ‘run the numbers’!

* Expressed as a % figure, and measured having been up a few hours on the day in question. This included: feeling fatigued, cognitively impaired (‘brain fog’), achy, irritable, and ill vs. ‘more my normal self’. Please note, all variables are dummies except ‘How I felt..’ (percentage point variables) and ‘Sleep Duration’ variables (# hours variable)

1) ‘Feeling’ % Results: (Avg: 51% | S.D: 8%)

Sleep Log Feeling Model

Lagg ‘Feeling’ Effect: How I felt the previous day, and the day before that, were by far the most significant factor in how I felt on the day in question. Every one percent better or worse I felt the previous day, would apparently influence how I felt on the day in question by around half a percent, with the relation with how I was feeling two days before about half as powerful

In other words, if I felt as bad as “30%” two days running, compared with a scenario in which I felt as good as “70%” two days running, by the third day the difference between the two scenarios in terms of how I then felt on that third day would be almost 30%, irrespective of other variables. This is pretty convincing evidence, for me, of the lagged nature of our illness in terms of peaks and troughs e.g. lingering ill feeling following bad days/relapses etc

A 3 days prior lagged variable was not statistically significant e.g. my body takes a couple of days to recover from bad days, or rather ‘bad nights’, but further back beyond two days prior the effect of having felt bad previously on how I feel on a given day is far less clear

Mild Exercise: I rated the exercise I did on the day before the ‘Feeling’ % variable was recorded, on a scale of 0-5, with 0 being baseline activity just to get through the day and 5 being pushing myself to the absolute limit. In my case 1 might be a brief walk or cycle ride down the road, 2 might be a walk/cycle ride to the shops and back, 3 might be a walk/cycle ride into town, 4 might be two trips to the shops or a lengthy trip to town, or a game of tennis or badminton

The ‘Mild Exercise’ variable was a dummy set to 1 for any exercise rating between 1-3 out of 5. Clearly, in my case, mild exercise both in the day time before I sleep, and the day prior to that, appears to have a beneficial impact in terms of how I feel the next day

I also created an intensive exercise dummy, capturing exercise ratings of 4-5 but the variable estimator was not statistically significant so it was excluded. Relatively intensive exercise often helps me sleep better/deeper but take its toll on how I feel subsequently in other respects

Perrin Technique (manual lymphatic drainage massage): The data confirms the sense I had when I first commenced Perrin Technique treatment that for the first 24 hours it seems to help induce a welcome deeper sleep

Unfortunately in my experience it also brought side effects in the 24-48hrs+ after administration, however this was not recorded in the sleep log as I did not want it to cloud my data and doesn’t strictly relate to the ‘Feeling’ % variable (related symptoms e.g. sickness/headache were unique in presentation/severity and thus irrelevant to the study)

Front Sleeping: The general health/sleep literature does not appear to advocate front sleeping but I had always suspected that there was a reason I was a front sleeper as a child. Since the age of about 16 I have done my utmost to train myself out of it but the data suggests that if I want to feel my best, perhaps I ought to ‘go with the flow’ in this regard!

My concern here is the potential long term implications regarding my theory that postural themes may play a role in the precipitation/perpetuation of ME/CFS, ergo if I do front sleep I do so with a single, low profile pillow, and I remain not too keen to advise others to front sleep

Sleep Duration: As one might expect, sleep duration had a pretty significant impact – for every hour more or less of sleep the difference in ‘Feeling’ % was 0.7% e.g. if I had 4 hours sleep vs. a healthy 9 hours sleep then the differential would be 3.5%. These figures may not sound like much but being as the standard deviation was just 8% this is profound

Woke more than once: Multiple awakenings, had a detrimental impact on the restfulness and restorative nature of my sleep and left me feeling worse, albeit typically not too much worse e.g. provided sleep duration was not affected (I was able to get back to sleep again)

Viral infection symptomatic: Unsurprisingly, being ‘with cold’ meant that I felt relatively cruddy. This was included really mostly as a control dummy

Seasonality: Over this single year period seasonality had an important role; I use those words quite deliberately as it would be preferable to compare seasonal effects across multiple years

Quite through which channels seasonality had an impact is anyone’s guess but this could well be to do with e.g. relatively enhanced day time activity levels during the warmer months – and less time spent slumped in a chair (postural/neuromuscular strain thematic), less post viral fatigue away from the dreaded ‘virus season’, and less exposure to cold

SAD can probably be ruled out as I have never suffered with depression/anxiety and model 2 below shows the opposite of what an SAD patient might expect re: oversleeping e.g. I had longer sleep duration during the spring and summer months than the autumn and winter, although the summer dummy relation was only significant at (p < 0.2) and the spring one was not statistically significant

Notes: The R square figures indicate that the listed coefficients offer an extremely good explanation of variance for a model of this nature

Almost all included variables are significant at (p < 0.05). This means the correlation between those variables and how I felt on the day in question is pretty irrefutable, except in the case of the ‘Woke more than once’ variable, but even this relation we can have an 80% level of confidence in

A number of other variables were recorded but were not included in the final model due to lack of statistical significance

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2) Sleep Duration Results: (Avg: 7 hrs 7 mins | S.D: 1 hr 20 mins)

Sleep Log Sleep Duration Model

Lagg ‘Feeling’ Effect: How I felt the previous day, and the day before that, were again significant factors, this time in how long I slept for. For every 1% better I felt the previous day I would sleep for 3 mins less on the day in question, for every 1% better I felt 2 days prior I would sleep 2 mins more on the day in question. An echo effect explanation:

2 days prior: Feel good, so sleep less

Previous day: Slept less, feel bad, so sleep more the night before the day in question

OR

2 days prior Feel bad, so sleep more

Previous day: Slept more, feel good, so sleep less the night before the day in question

Front vs. Back Sleeping: This result may appear contradictory to model 1 but might well indicate that my body needs less sleep on my front compared with my side, and less on my side compared with my back e.g. in terms of restorative efficiency of sleep: front > side > back

Shorter, deeper sleep, is surely preferable to longer, lighter, disturbed sleep on one’s back, provided by ‘shorter’ one doesn’t mean considerably less than say 8 hours; my average sleep duration (7:07) is suboptimal in a healthy person, never mind a PWME!

Awoken/Awakening: Being awoken often sends adrenaline pumping through us so it’s little wonder that this lead to reduced sleep duration (many PWME struggle to get back to sleep if disturbed)

Awakening reflects waking incidences not attributable to environmental disturbance; this could be due to anything from bladder/abdominal discomfort, through nightmares/hypervenillation, to sporadic inexplicable relative insomnia. This is another variable really included mostly for its use as a control dummy

Woke more than once: Multiple awakenings usually means ending up sleeping lighter, and hence longer to compensate

Shallow breathing on waking: Predictably e.g. hyperventilation, undermined duration of sleep

Viral infection symptomatic: One of the ‘silver linings’ of coming down with a bug is that my body tends to shut down for longer, so I get more sleep

Seasonality: As noted above, I appeared to sleep for longer during the warmer months, or else there was no clear relationship (spring and winter seasons were not statistically significant)

Notes: The R square figures may be very low e.g. compared to the first model but all this means is that this model cannot account for very much of the variance in the results

A number of other variables were recorded but were not included in the final model due to lack of statistical significance. I kept the seasonal dummies in, in spite of spring and winter not being statistically significant, as they were significant for the previous model and wanted to retain their power, however flimsy, as control variables

Diaphragm Breathing‏ ~ My Experience

Largely or completely altering our respiratory habits e.g. re-training, can be quite a mission! However, I’ve found that once you get into the swing of regular diaphragmatic breathing it soon becomes like second nature, provided the conditions are right *

Open

* Examples of conditions that may hinder routine diaphragmatic breathing:

  • Structural, or muscular, tightness of the trunk, including thoracic/rib cage
  • Bad posture e.g. slumping (spine must remain straight day and night)
  • Playing a lot of sport (encourages chesty, or ‘costal’, breathing)
  • Poor dietary discipline e.g. overeating, or lack of essential nutrients
  • Poor sleep habits e.g. sleeping on one’s back
  • Emotional aspects e.g. stress,* anxiety, anger

Computer games can be a source of adrenalin release/chronic hyperventilation

Chesty

I have found the following to be helpful in re-training my respiratory habits:

  • Habitual deep/slow breathing as part of my morning routine e.g. in the bath
  • Including breathing prompts in my alarm reminders for other things
  • Tying a theraband around my chest for a while during the day *
  • Reclined seated posture ** ~ freer abdominal motion
  • Irritable bowel and bladder issues addressed ~ freer abdominal motion
  • Mental checklist when going to bed, includes posture and breathing

This should not be done long term as it may interfere with blood/lymph flow

** This is advisable for people with M.E. (PWME) anyway, as hip flexion ~ nerve sensitisation

JustBreathe

For me the most important times to try to remember to train diaphragmatic breathing are at the beginning and the end of the day, as this sets you off on the right footing in both active/sleep phases. In a matter of a few weeks I’ve seen a marked difference in my habits

The Perrin Technique ~ My Experience

In February 2012 I decided to investigate The Perrin Technique (PT) following a recommendation by a fellow student with ME/CFS. When I suspended my university studies (not for the first time, due to ill health) I decided to give PT a good go

NeuroMuscular

At first I got friends and family to help administer the full routine (from May 2012) but finally decided to go and see Dr. Perrin himself (at the behest of my parents) a few months later

Since then I have been receiving regular treatment from a qualified practitioner (mostly local, although I have had two sessions with Dr. Perrin himself) roughly in line with the treatment schedule he details in his book, on top of daily ‘self treatment routines’:

  • Quarter 1: A session every week
  • Quarter 2: A session every fortnight
  • Quarter 3: A session every 3 weeks
  • Quarter 4: A session every month

I have completed about a year of treatment, and it feels (both to myself and my practitioner) that lymph transit has improved. This being the case, going forward I will not be attempting anything like the recommended frequency of full routine self treatment (the back massage part is a killer) but do intend to continue to do most of the self treatment routine, and to attend sessions with my local practitioner (monthly at present but I may further reduce frequency)

Improvements I have seen to date, arguably attributable (at least in part) to PT:

  • Improved congestion/inflammation of the cerebrospinal region e.g. back ‘crankiness’
  • Improved mental functioning e.g. mental energy, concentration, and cognition *

* I should note that this may have more to do with starting to supplement with D-Ribose

Inflammation

Drawbacks associated with PT:

  • The impact of the body having to deal with processing the lymph is quite intense
  • The treatment precludes all but very mild exercise *
  • My POTS seems to have worsened this year (possibly a link with deconditioning)
  • Reaction to treatment (thirst/drinking a lot) has the potential to disturb sleep
  • Reaction to treatment involves ‘BACNE’ (spots on your back, as toxins try to escape)
  • Cost (£40 per session locally, £95 per session with Dr. Perrin)

* You are told not to do anything that stimulates the sympathetic nervous system. I had a unique acute PENE relapse when I had just started PT and attempted to play tennis

4VC

From a theoretical perspective, if the improvements described are attributable to PT then it’s also fair to say that it may be part lymph drainage improvement and detoxification, and part reduced neuromuscular tension, plus possibly functional mobility e.g. nerve glide and joint interaction

These themes are associated with restricted/diminished neurodynamics and neural and neuromuscular strain ~ reduced neural or ‘neurogenic’ peripheral-central sensitisation (Rowe et al.2013). See Wolfe Hypothesis and Wolfe Protocol for further detail

Low Carb Regimes ~ My Experience

At the beginning of August 2012 I embarked upon my second self imposed anti-Candida Albicans regime – my first having proved helpful back in 2003/4. I did this as I had:

  • Re-developed symptoms consistent with those seen in Candidiasis * (see bottom)
  • Realised that my diet was punctuated with snack food/high in sugars
  • Performed a spittle test, the results of which were positive
  • Come across Candida Albicans in reading up on CFS (see this page)

I started out by narrowing my carbohydrate intake to just brown rice and select cooked vegetables e.g. cauliflower and broccoli, as well as introducing mild probiotics (yogurt) and natural anti-fungal foodstuffs (virgin coconut oil, coconut milk, and raw garlic)

After a couple of weeks I decided that the ‘die off‘ (unpleasant side-effects of the bacteria dying off) had peaked and it was time to move to the most extreme phase of an anti-candida regime, the ‘cleanse‘ phase. The effects in this phase were, as anticipated, rather hard going:

  • Toxic stress ~ pronounced inflammation e.g. a ‘thick’, deep headache and mild pressure in my head that remained with me every day + nausea (as my liver tackled ‘die off’ toxins)
  • Weight loss ~ as one might expect from someone with M.E. whose metabolism is on the extreme side as it is, on such a limited diet) ~ 65kg to 61kg in a matter of weeks
  • Weakness ~ no strength in my limbs combined with faintness that had me ostensively bed-bound for the entire first week

Having persisted with the cleanse phase for the maximum recommended period of a fortnight, and having returned to the more balanced ‘strict diet‘ (which included eggs and meats), I was over the worst of it

The next phase was to introduce concentrated probiotics (tablet form), so as to repopulate the gut with ‘friendly bacteria’, to continue with natural anti-fungals so as to purge any residual Candida (you never get rid of it completely), and to monitor improvement in symptoms

Once all signs of candida overgrowth are gone, one may begin to re-introduce different types of complex carbs and build carefully back up, over time, to a fairly normal diet

Source: thecandidadiet.com

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I went on to pursue a leaky gut protocol and in general felt better/clearer both in the head and the gut, although I had lost a lot of weight by the time I was back on something approaching a normal diet (down 6kg to 59kg)!

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2013 Re-intervention

Week 1: Lowering carb intake (14/10 – 20/10)

  • Oat bran breakfast (oat bran, water) + currants
  • Hemp protein for brunch (11am) and tea (4pm)
  • Sardine salad (sardines, lettuce, olive oil, lemon juice) + chickpeas for lunch
  • Cooked veg (broccoli, cabbage) and chicken for dinner

Head felt clearer but headache, weakness and fatigue kicked in quite quickly

Weeks 2-3: Maintaining low carb intake and introducing mild antimicrobials (21/10 – 10/11)

  • Oat bran breakfast (oat bran, water) + currants + modest amount of coconut oil
  • Sardine salad (sardines, lettuce, olive oil, lemon juice)  - no chickpeas for brunch
  • Home made chicken curry (contains garlic + onions + chickpeas) for lunch
  • Hemp protein or chicken stock for tea (4pm)
  • Cooked veg (broccoli, cabbage) and chicken for dinner
  • Small amount of oat bran before bed if necessary

Hard going, felt very low energy

Week 4: Cleanse phase I – starve microbes with minimal carb intake (11/11-18/11)

  • Oat bran breakfast (oat bran, water) – no currants
  • Hemp protein for brunch (11am) and tea (4pm)
  • Sardine salad (sardines, lettuce, olive oil, lemon juice) – no chickpeas for lunch
  • Cooked veg (broccoli, cabbage) and chicken for dinner
  • Small amount of oat bran before bed if necessary

Very hard going, felt very hungry/weak

Month 2: Cleanse phase II – kill remaining microbes with anti-microbials (19/11- Xmas)

  • Coconut oil, or raw garlic, or grapefruit seed extract (anti-microbials) first thing
  • Oat bran + currants for breakfast
  • Hemp protein for brunch (11am) and tea (4pm)
  • Sardine salad or homemade chicken curry + chickpeas for lunch
  • Coconut oil, or raw garlic, or grapefruit seed extract (anti-microbials) before dinner
  • Cooked veg (broccoli, cabbage) and chicken for dinner
  • Small amount of oat bran before bed if necessary

Body acclimatised to low carb environment, felt better, weight stabilised, but remained weak

Month 3+: Rebuild phase – reintroducing ‘good bacteria’ & select carbohydrates

  • Probiotic first thing
  • Oat bran + currants for breakfast
  • Hemp protein for brunch (11am) and tea (4pm)
  • Coconut oil, or raw garlic, or grapefruit seed extract (anti-microbials) before lunch
  • Probiotic before bed
  • Tomatoes
  • Carrots (modest amounts)
  • Quinoa (modest amounts)
  • Potatoes (small amounts)
  • Parsnips (small amounts)
  • Almonds (small amounts, soaked overnight)
  • Pecans (small amounts, soaked overnight)
  • Walnuts (small amounts, soaked overnight)

Continuing to generally avoid:

All alcoholic beverages

Grains ~ some brown rice is ok, in moderation

Milk products ~ undenatured whey protein is ok

Industrial seed oils and nuts

High glycaemic foodstuffs

Starchy vegetables ~ some sweet potato/potato/carrots/parsnips is ok

Legumes some consumption of beans is ok

Artificial additives

Caffeinated drinks

Red meat

Have regained most of the lost weight, GI feel healthier and IBS symptoms/digestion much improved!

Further reading: Wolfe Protocol: The Leaky Gut

Healthy Nutty Chicken Korma

A delicious dish that is safe on an anti-Candida or Leaky Gut diet, and fights microbes too!

Costs £5-10 to make (depending on type of ingredients used). Feeds 4 people

 Ingredients //

  • 4 cloves of garlic
  • 1 handful of soaked almonds
  • 5 tbsp virgin coconut oil (or 3 tbsp olive oil)
  • 2 thick nobs (50g) of butter
  • 2 medium size onions
  • 1 tsp cinnamon
  • ½ tsp mixed spice
  • 3 or 4 medium size tomatoes
  • 4 chicken breasts, sliced and diced
  • ½ tin (200ml) of coconut milk
  • 50ml water
  • ½ tsp cayenne pepper
  • ½ tsp chilli powder
  • ½ a large pot (250g) of yogurt – ideally Greek yogur
  1. Finely slice onions
  2. Place the butter in a wide pan and set over high heat
  3. Add the cinnamon, stir once or twice, then add the onions
  4. Stir and fry for about 3 mins or until the onions turn brownish
  5. Prep the garlic (sliced) and almonds (broken up a bit)
  6. Pop the garlic + almonds + coconut oil/olive oil + 3 tbsp of water + onions in blender
  7. Pour the blended ingredients back into the pan again, over a high heat
  8. Blend the tomatoes and pour them into pan
  9. Pour the 200ml of coconut milk into pan
  10. Shake the 50ml of water around in blender to then pour this liquid into pan
  11. Dice the chicken, and add it to the pan along with the coconut milk
  12. Stir in the cayenne pepper and chilli powder
  13. Bring to boil. Cover, turn the heat to med and simmer for 10 mins (stir halfway through)
  14. Remove the cover and cook on high heat stirring regularly, until sauce thickens
  15. (You may wish to add chickpeas and/or [pre-cooked] chana dal at this point)
  16. Turn heat down to low, stir in the yogurt and allow to warm through before serving
  17. Optional seasoning: Add 1 tbsp of Stevia or Xylitol (to sweeten) + salt to taste

Serve with chickpeas, beans, wild or brown rice, or chana dal

Joining the ‘blogosphere’

Image

Having resisted the nascent trend for a number of years, recently I created formal email, facebook and youtube accounts, and have now decided that it is time to break my vows and contribute to the billions of pages of drivel now in circulation in cyberspace via a ‘blog’

“Nerds of a feather blog together”

For many years I mocked overly enthusiastic, stereotypically self obsessed/narcissistic, oddball bloggers for their foolishness but now the time has come to join their number as I can see no better way of formalising and sharing misguided views and earth-shatteringly dull experiences.. and it’s high time I did both, particularly on health matters where there is something of a serious, ethical impetus