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

[MeSci]

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

Re your reference: most of this refers to increasing fluids, not specifically water. It is also titled 'GENERAL INFORMATION BROCHURE ON ORTHOSTATIC INTOLERANCE AND ITS TREATMENT'. It appears to relate to NMH and classic POTS. I do not have these. Not all people with ME/CFS have. I have hypertension, and possibly the opposite postural changes to people with POTS, as I get tachycardia when I lie down rather than when I stand up.

Also, it is advice from a clinic, not a scientific paper, and it does not have in-text references to scientific papers on which the advice is based, just a bibliography at the end from which it is impossible to ascertain which article/paper relates to which statement.

Basing your own advice on someone else's unreferenced advice risks disseminating incorrect information, as well as a possible 'Chinese whispers' effect in which each person who repeats info gets something slightly wrong, and so on.

I find it odd to take diverse bits of info from diverse sources, some being advice from other sources which do not show clearly their own evidence base, and some derived from scientific papers (yet even these have not been carefully analysed for rigour and credibility), then collate them together and put one's own name (or even more strangely, an assumed name) to the results.

I consider that science-related advice, especially when people's health and welfare are at stake, should be based predominantly on original scientific papers which the writer has analysed and shown that s/he understands.

 

[Snowdrop]

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.

Old post I know but I just wanted to say that the small gain I have made to my health from the lowest point is due in large part to the fact that I finally took the 'bold' step of staying in bed after waking in the morning.

The 'natural' thing to do is to get up when one wakes in the morning no matter how unrefreshed and try to get on with the day and accomplish something of what needs doing (sporadically between resting on the couch). Instead, one day I just stayed in bed finally fell asleep again and discovered I had a better day. Now it's my routine.

I wake constantly in the night and take a long time to fall asleep so that extra few hours has helped as I cannot nap during the day. Once I'm up my brain becomes too engaged I think.

 

[John H Wolfe]

Re your reference: most of this refers to increasing fluids, not specifically water

I included 'fluids' and your warnings re: osmotic diuresis/polyuria in my protocol subsequent to your last response

It appears to relate to NMH and classic POTS

It's from Rowe's hospital, who deal with a great many ME/CFS patients. Almost 100% of PWME have demonstrable orthostatic intolerance of one form or another

I have hypertension, and possibly the opposite postural changes to people with POTS, as I get tachycardia when I lie down rather than when I stand up

How curious! Have you had high blood pressure readings in all positions? (standing, seated, prostrate)

Also, it is advice from a clinic, not a scientific paper

I'm not sure any studies have attempted to examine this?

Basing your own advice on someone else's unreferenced advice risks disseminating incorrect information

At the very top of my protocol, you may not have noticed, it reads:

“The advice given in this guide is based upon:

My understanding of the rudimentary underpinnings of general good health
My understanding of the illness and its underlying causes
The expertise of a number of specialists (both conventional and 'alternative')
My personal experience with ME/CFS over more than a decade”

Individuals are at liberty to decide for themselves whether this an appropriate basis upon which to be giving advice, and I am afraid I am not going to deny visitors to my blog the many benefits that many of us enjoy from such carefully considered, altruistic endeavours simply because this or that person is not satisfied that component parts have yet been tested to destruction

I find it odd to take diverse bits of info from diverse sources

Again, a multi-source, multi-disciplinary, integrative approach may not suit everyone but there are many, such as I, who believe that this type of approach is the one most likely to bear the most fruit, given the complex, multi-systemic, nature of our illness

Even if I had the time/energy to limit my protocol/advice to strictly scientific sources narrowing it thus would vastly decrease both its efficacy and its accessibility/resonance with those whom have already come to certain similar realisations/rules of thumb for themselves

even these have not been carefully analysed for rigour and credibility

More critical evaluation would be great, but unfortunately I have bigger fish to fry right now, I am juggling an awful lot and my disease model is to my mind a lot more important in terms of the benefits it may bring to research/the community

put one's own name (or even more strangely, an assumed name) to the results

Not sure what’s wrong with putting my name, or my pseudonym to my protocol but if you have any constructive suggestions for a funkier name then feel free to share them