A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

@Bill

Same here--agree with this....

 

Neutraceutical as a term is at least decades old. Its about using nutritional supplements as a drug, not just to restore nutritional balance.

For a pilot study I am tolerant of failures in methodology to some extent. Budgets are often tight and better methods give way to cheaper ones. However later clinical trials must use objective outcome measures. Diagnostic protocols need to be clear. Long term follow-up is critical. For a medication its also important to double blind the study. Neither patients nor doctors should know who is on what.

PDH problems have been found in other studies, and I recall talking about this with researchers in the early 2000s. There is a long way to go on the science though.

 

@ME/CFS when approx will this treatment become available? I would be so glad of any improvement. Fatigue is a big issue for me as I need to sleep during the day. I hope we won't have to wait years for this considering it has no harmful side affects...thanks for all your replies..

 

This is my experience. I have also had long periods, lasting months, where this energy deficit still occurred and there was no fatigue. Fatigue is just a sensation, its the availability of metabolically derived energy that matters. These usually go together, but not always. Fatigue never stopped me doing anything. Energy insufficiency stops me doing almost everything.

My current understanding is that this is because we cannot increase energy supply on demand. What we have is what we have, though some of us will be operating under our low supply and so have a reserve. I also find that after rest my muscles have a tiny bit of energy that is rapidly depleted, presumably stored energy from prolonged rest.

This issue is most clearly shown by low or very low anaerobic thresholds.

 

Subjective reports are never great but are OK if proper blinding occurs.

 

Any study using only the Chalder Fatigue Scale needs to be looked at very carefully as its not a very good scale and its hard to assess outcomes.

 

Quite so. Doing stuff needs energy conversion at a required rate; if it won't then you don't. Elementary physics.

 

How would a person be able to measure "metabolically derived energy" other than through the sensation of fatigue (or the lack thereof)?

To me, it seems like a distinction without a difference. The sensation of fatigue is the body's means of signaling a lack of energy.

Bill

 

That's an easy one.

On one level, when you feel basically okay, as okay as is possible anyway, you want do do things, you've got things do do, things that need doing, but nothing happens, and eventually you realise several days have gone past, and still nothings happened. This is not fatigue.

On another level, when your body puts up extreme resistance to moving, in any way, when it feels like your weight has increased several fold, an impression borne out by joints threatening to fail when you move, or actually failing, because the muscles that normally support them aren't doing squat. this is not fatigue.

I understand what is probably meant by the phrase "metabolically derived energy" although I probably wouldn't phrase it like that. For the first several years I could use energy at a certain rate, which was lower than my friends, I could walk indefinitely, longer than others anyway, but if, for any reason, my pace needed increasing beyond what was possible from the energy my body was creating moment by moment then I would firstly not be able to for long, minutes, and secondly it would make me ill. There was a clear boundary, below it, no problems, above it I would be unable to continue and get sick the next day.

Of course these days, there is no boundary, or rather it's so low..........

 

I guess I'm not following.

If I'm personally feeling okay (not feeling fatigued or lacking in energy) and have things that I want/need to get done, one of 3 three things happens:

a) My body tells me that the exertion of the task would put me at risk for a crash, so the task doesn't get done and/or is done very slowly
b) I get distracted by other (perhaps more pleasurable, or more pressing tasks) so I reprioritized my energies.
c) I tackle the job

I've never experienced being incapacitated by a lack of energy without feeling fatigued. I have made choices to limit activity when my body has given me "PEM warnings."

I have never experienced the sensation that my joints were going to fail (and my sympathies to those who do).

I still don't get trying to separate a lack of "metabolically derived energy" from experiencing the sensation of fatigue. I think the two items are inextricably linked.

Bill

 

..and the point that's being made is....not always. Just because you haven't experienced doesn't mean it doesn't happen to me (or @alex3619 ).

 

You haven't explained the distinction in a way that makes sense to me. Just being honest.

Is the measure of "metabolically derived energy" whether things that need to get done, don't get done even if one is feeling well?

That isn't very satisfying.

Bill

 

I'm sorry about that, I would appear to be unable to communicate what seems to me to be a very simple thing.

 

OK. I can totally relate to the examples; however, (in my case at least) my body gives me pretty clear warning signs that tell me I will soon pay a huge cost (by being subject to crippling fatigue) if I carry on pressing myself beyond my limits.

Sounds like we have the same experience. Fatigue is still the price to be paid for the over-exertion if we don't keep within limits. Right?

Bill

 

When I wake up in the morning and am overcome with the tidal wave sensation that I have no energy to get anything done - I call that fatigue.

When I walk 50 metres along the footpath and I'm suddenly overwhelmed by leaden legs and weakness - I call that fatigue.

When I'm doing something that requires a bit of energy and it's imperative that I lie flat on the floor immediately - I call that (severe) fatigue.

When I'm paying days later with all of the above plus severe cognitive issues (can't add two single digit numbers, for example) because I pushed myself too hard - I call that fatigue. (I can't bring myself to seriously use the word 'malaise' yet!)

Etc., etc.

I choose to use the word fatigue because it describes these situations of mine succinctly and accurately. I will continue to use the F word even although one of the first posts I read when I joined this forum was a very exasperated one saying that ME/CFS is not about fatigue for goodness sake!

This is my experience only, of course.

 

I would say at the beginning of my illness and the following 10 years I did not have fatigue. I was unable to produce energy 'on demand' and had a lack of stamina.

Later on in the years I started feeling fatigue because of changes to my immune system. I feel as though I have sickness syndrome and feel sluggish as though my body is constantly fighting.

 

It was tested and it failed to reach significance
https://www.s4me.info/threads/kpax0...ive-randomized-trial-2018-montoya-et-al.3410/

Also you can buy most of the ingredients yourself, just get your doctor to prescribe you the Ritalin. And besides they would be buying the ingredients wholesale then repackaging them if it worked, plus adding a profit margin granted by the patent, so it may even be cheaper to source them yourself (it still won't be cheap).
Remember your using a drug that failed to help patients.

https://www.s4me.info/threads/pharm...ampligen-rituxan-and-kpax-002.686/#post-12150

 

Wading into the fatigue versus PEM thing. Fatigue is a wholly unhelpful description (for me) because it's present in scores of chronic illnesses. It doesn't distinguish ME from other illnesses. Besides, I'm fatigued every day, and can live with that.

But PEM is insidious. It means I can never again enjoy doing anything, because as soon as I try, even if I think I have the energy today, I'll pay for it days later. That's why PEM is, and will always be, the worst part of this illness for me. If I'm fatigued, I can just stay in bed or rest on the sofa. But PEM actively punishes me for living my life.

 

So true, it punishes you for trying to live a little.

 

Currently this is done via the two day CPET or metabolic studies. Brain metabolic studies have been done for a very long time in CFS and ME. We typically have brain hypometabolism, and I am anticipating a new study that is currently not published that I hope will explain this a bit more.

You can push through fatigue. You cannot push through energy limitations.

In my own case I experienced the same limitations without any fatigue. That changed my perception. The fatigue is closely associated with energy limitations. I think good pacing, at least for mild patients, can lead to decreased or almost no fatigue. In very severe patients the two would be almost synonymous.

So from a patient perspective, for most patients most of the time, I expect that fatigue is good enough to assess capacity. Its not precise, but it works.