Who belongs on a list of the top ME/CFS researchers?

[Leopardtail]

I find excellent products (mostly at iherb) that work for both me and my daughter. We've been in nearly every stage of ME from severe to remission. I've never had trouble finding low or reasonable cost products online, even when I had severe cognitive dysfunction. YMMV

My dominant ME symptom remained cognitive dysfunction, I had a concentration span of less than three seconds. That made finding stuff a nightmare for me personally. I realise that ME is variable and that for some it is more about pain. I had to wait many months before I had the faculties to use one website and even that was a torturous several months to complete one order. There are several people in my local support group for whom I do now offer a purchasing service because they simply cannot cope.


Nope, I don't. My medical advice and my medications (and supplements) come from entirely separate sources. Always have.

It has not been my experience that Dr Teitlebaum's website is easier or his costs cheaper than a number of other online supplement retailers. However, I haven't looked at his website in several years, so maybe things have changed.

I'm glad you've found a source of medical advice and products that satisfy you.

I initially took the same approach (and avoided his products) until I had success with stuff I could buy elsewhere and had time to follow up on the research. As I started to realise that I would have chosen very similar formulations, I decided that I was adding both to work and to cost attempting to do things for myself.

I simply don't think Dr T qualifies as a top ME/CFS researcher (as requested by the OP) or even a top ME specialist physician.

I take the view that good quality meta-analyses are as important as original research and the maintenance of overview is critical. I also take the view that far too many researchers in the ME field lose that overview and it does us a lot of damage.
The vast majority of ME researchers as focus too strongly on one system. Great respect to Klimas et al. but we also need researchers present who focus on overview and the whole system and perform good quality meta-analyses.
Check the recovery rate, the very long list of research references in his book and you will find he is a walking encyclopaedia of scientific research across systems. Try liaising with him too, he's very generous with his time.
Consider also that MyHill, Howard, et all use his research and methods on the endocrine system.
For me it is that development of overview, combined with its application in effective therapeutic technique that qualifies him.

 

[Leopardtail]

My rebuttal is that IMO it's more likely to be a period of remission - with the 'Roadrunner' not
far removed,~)

The above may sound negative but the intent is less loaded - that dealing with what 'it' is might
be more likely to lead to inner peace while in search of relief than chasing rainbows. But 'it' is only tentative until more evidence is uncovered. Thus, the ongoing pursuit and/or development on knowledge.

Personally, and this is pure opinion, I regard ME as likely genetic, likely inborn and triggered when we become ill. I deliberately use the word 'recovered' as opposed to 'cured' so we are in at least some agreement there. I ran several cycles of stopping the supplements that worked, and restarting got worse with each stop, rapidly better with each start - hence they are clearly working. Recovery for me means participating in life again, not cured and taking nothing.

 

[MeSci]

Personally, and this is pure opinion, I regard ME as likely genetic, likely inborn and triggered when we become ill. I deliberately use the word 'recovered' as opposed to 'cured' so we are in at least some agreement there. I ran several cycles of stopping the supplements that worked, and restarting got worse with each stop, rapidly better with each start - hence they are clearly working. Recovery for me means participating in life again, not cured and taking nothing.

I take your point about subtle differences between recovery and cure, but it is particularly important with diseases vulnerable to relapse to distinguish between recovery/cure and remission. It is horribly common for people with ME to mistake remission for recovery and go back to full activity, only to suffer severe relapses as a result.

 

[Leopardtail]

I take your point about subtle differences between recovery and cure, but it is particularly important with diseases vulnerable to relapse to distinguish between recovery/cure and remission. It is horribly common for people with ME to mistake remission for recovery and go back to full activity, only to suffer severe relapses as a result.

I agree completely. I personally made that mistake twice before learning the hard way.

The way I see it (in plain English) is that even if you find the magic formula that 'patch fixes' the core problem you all the damage done by years of being unwell has to be repaired too. During that period sufficient rest and discipline is needed to effect the greatest possible repair. The body can use it's energy to heal or to do stuff, but there is only so much of it.

It's probably worth pointing out that it took an awful lot of rest, and some changes to my social circle (I have a much better one now) to effect the changes on top of all the biochem stuff I have been up to.

During that first period when some degree of recovery begins, I find it's the hardest time of all to rest. How about you?

 

[Leopardtail]

I feel for you(r) position. How did you deal with your demise for 35+ years?
OTOW, you don't have to sort back to the beginning - whatever you are find now has been sifted
for you. Otherwise, plan for overload!

I have a library of books that needs old Dewey Decimal sorting - many mundane or highly esoteric.
For example, along the path to now there's everything from 20 years of the CFS journals to the first
year pharmacy school text(s); other med texts on virology, neurotransmitters, cardiology, et al. I used to lean
towards the academic stuff but don't profess much erudition.

There's even a privately published tome by a guy who is now 3 feet tall! He used to be 6'5" before he
went to Africa in search of a cure for M.E. It seems he told some revered tribal chief there that he didn't believe in witch-doctors ... ,~>

The referenced thread is current in General Discussion.

TT = testosterone levels.

Some supplements are mentioned in this thread & others but it's hard to know which are of most help
(or synergy).

As for rxs I fall back to extrapolations from early protocols (a la Cheney, et al). The single most help is Klonopin; then Adderall; then sleep rxs, rotated. All are heavily researched; minimal doses of each; still side effects need balance. At my stage it's a trade-off for better quality of life today rather than following a more 'natural' path for future health. [My current level may average~50% (of what I can recall as premorbid), and vacillates.]

Oh, and diet: Paleo, and ~ no sugar, and ~no dairy, and of course no alcohol nor smoke. Conflicted protocols? Go figure:~/

What has kept you going all these years, and what were/are you treating?

Stretch,

Well for the first 6 months I was misdiagnosed with Glandular Fever - I now know it's never been in my system. After that it was long period of PEM causing flue like symptoms, I just got mad as heel, rested when I crashed and wondered what the hell was wrong. I spent a lot of time reading up on alternative health and found a lot of my symptoms seemed to relate to B-Vitamins (go figure) and certain proteins (again go figure). I unwittingly kept my ME a bit more at bay through that symptomatic 'natural health' approach.

Once work started I found that I was in peak health (super fit) mentally and kind of okay physically for about three or fours months then the energy starting running out over the next three or fours months. That was followed my three months of crash, then around another three months of recovery. Getting very disciplined with the diet helped this (again B-Vitamins, Tyrosine/Tryptophan sources, Vit C). During this period it was less obvious that something was seriously wrong rather than me just being 'unfit' I could not work out what the hell it was. It was a mixture of will it ever change and why me? at that point.

As of 2001 I crashed and crashed hard (virtual vegetable) as a result to trying to work too hard and simultaneously play too hard. It took about six-nine months to come out of full crash and more than five years to get half way recovered. The usual things were no longer working. I was diagnosed with depression at this point despite having very positive mood and doing al the things you need to do to get well (exercising all I could, trying to stay active) all of which buggered up my recovery. About 2004 I started getting cross and arguing with my doc that if I had depression the pills would work and that I had good mood but no energy. I then annoyed the hell out of him by going back with all kinds of possible theories what might be up with me (e.g. Candida).

I started reading up on endocrinology in 2007 (due to ME buggering up my diabetes) and general physiology circa 2008.

As of 2009 I had the DWP pull the plug on my income and crash me harder than ever before (mix of stress, worry, workload appealing and really poor diet due to finance).

Finally got a tentative diagnosis in 2009 along with message it was incurable and spent three years fighting to get 'expert help' from my local NHS - really wish I had not bothered with that one.

I started reading late up in 2009 to work out how ME messed up blood sugar control in diabetics and when it became clear that the NHS would not help one bit realised I would have to find 'home brew ways of doing things'.

I got started with trying solutions designed to resurrect fundamental energy generation July last year and saw a very rapid improvement (compared with normal pattern and others with ME) - had a few brief stops and restarts to ensure what I was doing was working (ie ruling out coincidence). So far am getting MUCH better in a period when I would normally be bed bound (happened every winter).

I am now tweaking a 'one size fits most' protocol that most people with my variant of ME could self-apply without self crashing due to the wrong supplements. Meanwhile I am going after research funding to look deeper into some of the interconnected biochemistry that causes so much argument in ME - my hope is to 'join the dots' and work out which one of several personal theories is right re how the work of Pall, Myhill, Konynenberg (and others) meshes together.

Strange as it sounds the diabetes has been an advantage in all this. Because I have to be careful not to mess it up, I have to research exactly how each supplement/herb/medication is known/thought to work in order to gauge it's effect on diabetes - that's forced me to be nitpicking thorough and read at least three articles on everything in order to stay safe. Upshot quite a few common treatments for ME turned out to be very bad ideas for ME too (e.g. Nettle or Fennel teas) due to them fixing one thing and messing something else up.

I gave myself a good grounding in the symptoms of ME that related to ME or close friends and the possible causes. Given my background I started of on the endocrinology specific to ME in order to work out where I could most rapidly fix the largest number of symptoms. The other stuff is working out spider like from there. I came into the biochemistry tentatively circa March and seriously circa June after some of my first experiments with Alcar and Ribose paid off. I have established several 'chains of pain' along with a vicious circle or three. And well, am still going. Have reached the stage where I need direct access to a university library for those tomes that cost £400 each rather than £50.

The one thing that I am quite convinced by is that there is a correct sequence in which to apply things, and a number of correct combinations of treatments. I found certain things do harm if not proceeded by something else, but do good in the right sequence. That may be because I have had the disease so long though.

I guess the short version of that was wonder what the hell was wrong with me, then starting asking difficult questions, then start answering them for myself with a very stubborn rigour.

Staying upbeat and sane was definitely the hardest part.