CFS/M.E. ~ A Guide to Wellness by John H. Wolfe

[lansbergen]

Wolfe

I am not your amigo.

You presume you share certain experiences with me.

There is freedom of relegion but you are not a MD. You cannot advice ME patients.

 

[taniaaust1]

Stay hydrated: You should aim to drink 1-2 ltrs of water during the day, but be weary of mineral loss in urea, and of drinking too much in the evenings – again this may disturb sleep (full bladder). Consider taking small amounts of sea salt throughout the day (max 1 tsp total) but be careful to ensure that you are getting enough potassium too (for healthy cell energisation). Both measures will help mitigate against widely reported blood volume/orthostatic intolerance issues

Those who have low blood volume often need more water then that (Even with taking 2 drugs for this, salt and compression stockings, I often need 3L per day..sometimes more). That amount of 1-2L water is the recommendation for someone who doesnt have low blood volume.
I suggest you change the wording to aim to drink AT LEAST 1-2 ltrs.

3. Stay active: Light exercise 2-4 times per week is probably best for most; this could mean anything from low intensity, short lasting dorsal rotation exercises, marching on the spot, and other gentle home exercises, through to yoga/pilates, martial arts/dance, walking, swimming, and cycling. High impact exercise like jogging, and sports that place strain on the upper body like rowing/tennis/gymnastics are really best avoided until you are fully recovered

saying that is best for most, I think may be harmful as some who it isnt good idea at all for my think that most of us can do that. Doing that would be disasterous to me. I actually tried some yoga the other day and only got throu the first 3 exercises before I got ill from it. Dance is an aerobic exercise completely unsuitable for most. Swimming and cycling are aerobic exercises (I think?.. from how fast they crash me I think they must be.. one or two laps of a pool is enough to make me sick).

Walking is an issue for many of us due to OI (most of us have OI).. I collapse just trying to do my shopping when I need to do that... (and then have to spend the next day recovering just from a brief walk in a store). It would be fool hardly if I tried to waste the little ability I have to be on my feet on walking instead of focusing on necessarily life stuff eg some house cleaning. Due to the autonomic dysfunction this illness has caused by body.. with standing my BP can be up to 170/135 in one minute (severe orthostatic hypertension).

I was doing yoga and pilates before I got this illness for years and had to give both up due to being too sick. In my case the yoga exercise became unsuitable due to the OI (so i cant stand in one place), 2 my balance issues.. I started falling all over the place in class, I couldnt even balance properly in a crawl position on all fours any more..or arm would give out due to weakness and I'd nose dive into the floor (nearly got a blood nose). I actually was hurting myself and coming home bruised up. The yoga strength exercises started sending me into a quivering/tremoring mess and leaving me unable to use my arms after. I was doing the yoga with seniors.. the 95-98 year old had far less difficulty then I did, she could manage it, I couldnt.

Sorry I personally think that is highly bad advice for many who have ME/CFS and could cause serious issues or a permanent worsening for some. I was doing yoga and pilates before I got this illness for years and had to give both up due to being too sick. In my case the yoga exercise became unsuitable due to the OI (so i cant stand in one place), 2 my balance issues.. I started falling all over the place in class.. I couldnt even balance properly in a crawl position on all fours any more..or arm would give out due to weakness and I'd nose dive into the floor). The yoga strength exercises started sending me into a quivering/tremoring mess due to the use of muslces (leaving me afterwards shaking so much that I couldnt even feed myself with a fork).

Things like your comments make people think that most of us can exercise when many of us in fact cant...and need to use all activity ability on necessarly life things (dressing, eatting, bathing, housework.. I cant even do that.. i have a government paid home support worker for 5hrs per week as I cant even do my own dishes etc). I even dont dress or do my hair daily as I need to energy conserve.

(and I dont even consider myself to be int he 25% that has this illness severe as I arent bedbound and dont need to lay down on most days.. as long as Im sitting, not doing anything.. I dont get symptoms or post exertional symptoms. For myself. the less I do, the less symptoms I have)

I think you are underestimating how sick many of us are with this illness. Maybe change your post to say that exercise is "ok for some" rather then best for most.

I didnt read the rest of your stuff as I thought what you said there was just too disturbing and harmful so I didnt wish to read on..

nice try but i hope you remove what is dangerous for some of us. Interestingly I just voted and now see that 81% thought like me about it. I guess this shows that most of us are experiencing it at a different degree then you are experiencing the disease. (for me, the less I use my body, the better I feel and are). Note in the studies which come up with some exercise is good for us.. the ones who tento go into exercise studies are usually those who arent very sick.

Note.. it has been found that our bloods can be getting starved of oxygen when exercising, our bodies arent working physiologically to exercise as a normal persons body does. (there is something about this in the canadian consensus CFS document.. also note that the CFS defination in that document is different and tends to define a sicker patient group... I think most at this website fit the CC consensus defination and hence why are responding in a negative way to what you've wrote

 

[snowathlete]

It's like talking to a brick wall. You ask for evidence but don't really want to see it. 80% + think your wrong John and the feedback shows the level of disagreement is severe. Your own poll, but I expect you will overlook that like everything else that disagrees with your rigid beliefs. No, we are all wrong and you are right John!

I don't think anything at all would change your view. No amount of evidence will be enough. Because your not looking for the facts, rather you want to make facts agree with you - the worst way to approach and explain any entity with unknown elements.

You remind me of the early rounds of x factor, someone who genuinely thinks they are right, they can sing.why oh why do the audience disagree? Despite what is right in front of them they just cannot see it! I think you are sincere John, you dont mean harm, just sadly sincerely wrong and that alone could cause someone harm who is new to the illness.

 

[Adster]

In my opinion, any support guide should at least have some links to forums such as this one where people can get more comprehensive, up to date information as well as emotional support if needed.

 

[alex3619]

To stay hydrated in hot weather, I used to have to drink SIX liters of water a day, plus other non-water drinks. I would dehydrate very fast. You need to drink as much water as necessary without increasing your weight on a set of scales. Over hydrating is dangerous, but dehydration is also dangerous. If you need more water, drink it, but weigh yourself regularly. Don't allow your weight to rapidly climb even if you feel thirsty - that can lead to brain damage and death if you are retaining water. Similarly don't allow your weight to plummet rapidly if you feel thirsty - drink as much as you need. Bye, Alex

 

[MishMash]

If John W. and I went out hiking I would probably feel somewhat of the endorphin high. He would "see, now don't you feel better?" The answer would be yes, for about 12 to 24 hours. Then gradually the dreadful CFS crash, mind, body, total boy ache, depression, sensitivity to light, pain would start to creep in. Believe us when we tell you, it is a big part of this illness. It is like a normal person getting really, really bad flu symptoms.

But I can see how researchers/physicians get mistaken conclusions about CFS and exercise. Because they are drawing mistaken conclusions from snapshots in time.

 

[John H Wolfe]

I suggest you change the wording to aim to drink AT LEAST 1-2 ltrs

Thanks, I did this subsequently. I think I was recently told 2 litres minimum by a POTS/autonomic dysfunction specialist

I think may be harmful

I've moderated the language a fair bit in my guide now, to take account of the fact that it can do more harm than good in some cases/at certain stages of illness vs. recovery

with standing my BP can be up to 170/135 in one minute (severe orthostatic hypertension)

I see, that's a pain! I have the opposite problem (orthostatic hypotension)

In my opinion, any support guide should at least have some links to forums such as this one where people can get more comprehensive, up to date information as well as emotional support if needed.

Good idea, thanks

 

[Valentijn]

The guide is still horrible with regards to exercise. Combine that with the focus on "a constructive mentality" and the recommendation to get some CBT along with the exercise, and it's apparent you really don't have a clue.

And don't get me started on the "mild to moderate" recommendations. I am moderate - which means I'm mostly housebound and doing very light chores around the house is enough to wear me out and/or lead to a crash. Seriously, "light jogging"? A few minutes of clenching and relaxing my fists for guided "relaxation" crashed me once.

You really do NOT seem to understand that most of us are operating at a continuous energy deficit just to survive - either taking care of ourselves as moderate patients or struggling to work and earn a living as a mild patient. If I had the reserves for more activity, I would not jog, or march, or do yoga. I'd take care of my garden, cook dinner, or take a bath. NO ONE here is underactive, and your suggestion that exertion is the key to recovery is despicable.

Regarding sunlight for Vitamin D exposure, it's only available via UVB during the summer. 10 minutes of exposure in mid-April will have no effect at my latitude.

Again, much of the sleep advice is ridiculous. Sleeping too much, bad sleep hygiene, and so forth, are not issues. And as for raising your head if you have OI - are you a sadist?

Stop reading the BS psychological research and try actually learning something about the disease before purporting to offer advice to others.

 

[John H Wolfe]

If I had the reserves for more activity, I would not jog, or march, or do yoga. I'd take care of my garden, cook dinner, or take a bath

Good call

Regarding sunlight for Vitamin D exposure, it's only available via UVB during the summer. 10 minutes of exposure in mid-April will have no effect at my latitude

Sorry to hear that, thanks for the info

Sleeping too much

I wonder if you would expand on your view in this regard? Do you think we should simply sleep as much as our bodies seem to indicate we need to (without imposing limits), for example?

 

[John H Wolfe]

Update: The link to this guide has changed and the depth, breadth, and (hopefully!) ease of reading/presentation have improved somewhat since I made the OP:

http://johnhwolfe.wordpress.com/me-cfs-cfids-wellness-guide-wolfe-protocol/

I continue to welcome ideas, feedback and constructive criticism

Thank you

 

[Valentijn]

I wonder if you would expand on your view in this regard? Do you think we should simply sleep as much as our bodies seem to indicate we need to (without imposing limits), for example?

I'm saying we really don't have a choice. My own sleep is pretty good since a single supplement gets rid of the "wired" sensation, and my pain is well-managed.

But I have had times when my sleep seriously malfunctioned in a different way (phase shift?). If I tried to force myself to wake up an hour earlier than my body wanted to, or stay up an hour later, I would get extremely dysfunctional. Constant vertigo and basically my ability to see would be cutting in and out every second or so. Plus the really horrible feeling that comes with needing very very badly to sleep.

It's not something that can be fought with good sleep hygiene. I was able to get back on a normal schedule after two days of melatonin eventually, but that's not something I can take often since it puts me into zombie mode the following day. But melatonin doesn't work for for many ME patients, and if they're stuck sleeping at the "wrong" times then I whole-heartedly agree with them sleeping whenever they can. The alternative is a living hell, on top of all the other ME/CFS symptoms.

 

[lansbergen]

During flareups I could not sleep at all. When I was very bad these flareups could take weeks/months .Many times I wished I could be put in a coma for a month or so.

When I had improved enough I slept a lot.''

Unless I overdo, now I only need 6 hours sleep to be rested in the morning.

As I am an nightowl (and always was when I was still healthy) my sleeping hours usely start after midnight.

 

[John H Wolfe]

I have had times when my sleep seriously malfunctioned in a different way (phase shift?)

I too have experienced something akin to delayed sleep phase

If I tried to force myself to wake up an hour earlier than my body wanted to, or stay up an hour later, I would get extremely dysfunctional

Aye, I've had this too - crash so bad if I try to stay up a while longer than normal during a down cycle (relapse)

Also find it next to impossible to get to sleep significantly earlier than on previous nights and often wake up automatically at around the same time as I have woken the previous night, even if this was super early and made me super tired

Think perhaps it has something to do with the fact that our hypothalamus' are fried ~ circadian rhythms are that much more finely balanced/easily disturbed

It's not something that can be fought with good sleep hygiene

Agreed; the general guidance given in my protocol can't really legislate for/reverse stochastic events at the individual level, it's just intended help create the conditions in which they may be best tolerated/recovered from

if they're stuck sleeping at the "wrong" times then I whole-heartedly agree with them sleeping whenever they can

I would go for something of a 'middle way' in these circumstances - yes sleep as necessary, but always be aiming for improvement in sleep hygiene/discipline, particularly as the rest of the 'health picture' improves

 

[John H Wolfe]

Sinus Congestion - Manual Relief Routine:

1a) I would just do the 1st spot he demonstrates for 2-5 mins

1b) Then the same position/corner of eyes but putting pressure downwards, with fingers slightly bent for 2-5 mins

The two potential causes of my sinus problems that I know of are diet and dust mites

Dunno if this is of interest but I sent this routine suggestion to a friend who has flu t'other day

 

[John H Wolfe]

Oh - and please test it on yourself first before presenting it to the world.

I am doing so as I go e.g. my experience to date, in rough chronological order:

Pacing ~ rather helpful, at least in terms of mitigating relapses

GET ~ exercise is good for general health but must be approached very carefully and general activity increases are not particularly strongly correlated with periods of remission in my experience.*

That said, specific improvements associated with improved neuromuscular strain are probably important in delivering remission, at least to the subset of patients effected by biomechanical neurogenic sensitisation

CBT/NLP ~ potentially helpful e.g. for general wellbeing (whether a ME/CFS patient or not), although not so much for seasoned PWME who are aware of the cost of psychological pitfalls and can/do ordinarily manage psychosocial issues

Manual lymphatic drainage ~ somewhat effective in reducing inflammation/myalgia affecting the core and head, also therapeutic for viral/post viral symptomatic relief

Basic OI measures ~ salt supplementation and drinking plenty of water throughout the day does seem to help with OI, and sleeping with bed slightly elevated/not drinking too much fluid in the evening seems to aid nocturnal water retention (less [bladder] disturbed sleep/less dehydrated in the AM)

Leaky gut type GI intervention ~ rather effective in improving IBS and keeping a clear head

Nerve mobilisation ~ potentially effective but aggravating unless postural/dietary sources/other sources[?] of nerve sensitisation are first corrected

* "Physical fitness is associated with cognitive performance in female patients with CFS", but apparently the same is not true of level of physical activity (Ickmans et al. 2013)

 

[John H Wolfe]

I'm posting here as your comments pertain to my protocol specifically:

Many people with ME are deficient in minerals/electrolytes due to passing large quantities in urine - osmotic or solute diuresis

I am aware of the perils of polyuria yes, indeed we must take care to replace minerals

Drinking water - a hypotonic fluid - will further dilute the blood and exacerbate the deficiency

Unfortunately the flip side is that not drinking enough water leads to exacerbation of hypotension and hypoperfusion, particularly troublesome in terms of cerebral hypoperfusion and resultant vasoconstriction

I suggest people supplement with minerals as necessary and personally I take a little bit of salt with every drink of water I have throughout the day

People with this type of osmotic diuresis/polyuria need to drink fluids that are at least isotonic and ideally hypertonic

Perhaps I should add this to my protocol for clarity, thanks

In any case, I believe that the advice to drink 2 litres a day is based on poor evidence, even for healthy people

Do you have an idea as to how much water you take on each day?

 

[MeSci]

Do you have an idea as to how much water you take on each day?

Not offhand, although I kept fluid charts in 1999. I probably drink about 2 litres of fluid a day. It consists of tea, sometimes coffee, fruit juice, a very small amount of water, and typically a few small glasses of wine. I eat mineral-rich foods, take plenty of salt, and take vitamin and mineral supplements.

Do you have any references for your advice on drinking water?

 

[energyoverload]

It seems like comparing apples and orange. If you have actual ME that must by definition include post exertional malaise. ATP depletion from exertion leads to increase in symptoms universally via numerous pathways potentially including glutamate excitotoxicity due to failure of voltage gated calcium channels which are ATPase dependent. Hence glutamate significantly worsens sensory overload, pain and other symptoms.

 

[John H Wolfe]

It consists of tea, sometimes coffee, fruit juice, a very small amount of water, and typically a few small glasses of wine

Interesting, as you'll note from my protocol I have come across numerous reasons to avoid coffee and alcohol (and indeed both have a deleterious effect on me personally), but if you can tolerate them that's fortunate!

Do you have any references for your advice on drinking water?

http://www.cfids.org/webinar/cfsinfo2010.pdf , (bottom of p.7 and top of p.8)

 

[John H Wolfe]

If you have actual ME that must by definition include post exertional malaise. ATP depletion from exertion leads to increase in symptoms universally

Indeed it does, which is why I advocate supporting improvement in all aspects of the condition, including ATP support through various means including D-ribose and other supplementation, and warn that:

"It is important to bear in mind that if you try to push yourself before your health and energy levels are stable you may do more harm than good however"

..and suggest PWME select (wisely) from:

"a range of activities listed in order of lowest intensity, for PWME to consider, once they have done the groundwork"

(at least one or two of which are well within the remit of most PWME, at least during more stable periods, and do not involve marked depletion of ATP, cardiovascular strain, or risk of acidosis)