Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

[Sidereal]

MCAS is not ME/CFS, nor even a common symptom of it. And I do agree that supplements can be helpful for certain symptoms, but they certainly do not cause recovery or near-recovery of ME/CFS.

Full-blown MCAS is uncommon in ME/CFS but less severe issues with food intolerances, histamine, prostaglandins etc. are common. Severe MCAS is actually in some ways worse than ME/CFS because every time you eat you are in danger of anaphylaxis. You also end up in a situation where you cannot take any medications including antibiotics so something like an ear ache can last for months because you can't treat it. Also, it can lead to serious complications such as gastroparesis and needing to have a feeding tube put in. Not saying that ME can't lead to death but the threat of dying is much more immediate with MCAS.

Dietary changes and supplements have an enormous impact on my MCAS - both good and bad - even though it's a serious and complex disease. Most people on this forum have experienced negative reactions to foods and supplements, sometimes profound and prolonged negative reactions. If you are willing to grant that some foods and supplements can make an ME/CFS patients feel worse, even a lot worse, I don't see why the reverse couldn't be true also.

 

[Gingergrrl]

MCAS is not ME/CFS, nor even a common symptom of it. And I do agree that supplements can be helpful for certain symptoms, but they certainly do not cause recovery or near-recovery of ME/CFS.

I did not say that they were the same disease and was using as an example b/c the original poster said he was not certain what he has and I am no longer certain what I have (although certain issues are 100% certain including high EBV titers, severe dysautonomia, breathing issues, mold exposure, MCAS, etc.)

When I read this post, it does not relate to me as I cannot exercise b/c I cannot even walk! But for others, there may be pieces of it which are relevant.

I saw an ME/CFS specialist for one full year (at OMI which I don't think most would dispute is a clinic that focuses on neuroimmune diseases, specifically ME/CFS.) They have a full range of patients from those like me who cannot walk and use a wheelchair to those who are mild and can exercise. I am questioning my diagnosis after failing four PFT tests and having symptoms that most PWME do not have and lacking other symptoms that most PWME do have.

When I recently told my ME/CFS doc of my doubts re: this diagnosis, he said the very reason he thinks I do have it is b/c high EBV titers, dysautonomia, and MCAS are the most common co-morbidities in the patients he sees and I have them all. I still remain unclear but to him, the presence of MCAS made him feel stronger that I had ME/CFS versus the other way around.

ETA: My point is that there is wide variation in this disease called ME/CFS and when I read posts on this board, almost no two are the same!

 

[Sushi]

Minkeygirl ommitted to mention the word 'Possible' CFS that he used in his Title. He was not being misleading.

Note: at the time that minkeygirl posted, "Possible" was not in the title--it was added later.

 

[JPV]

Foods, diets, supplements, sleep protocols, methylation, exercise, positive thinking, etc do not cure complex disease.

Try telling that to Terry Wahls MD...

Like many physicians, Dr. Terry Wahls focused on treating her patients’ ailments with drugs or surgical procedures—until she was diagnosed with multiple sclerosis in 2000. Within three years, her back and stomach muscles had weakened to the point where she needed a tilt-recline wheelchair. Conventional medical treatments were failing her, and she feared that she would be bedridden for the rest of her life.

Dr. Wahls began studying the latest research on autoimmune disease and brain biology, and decided to get her vitamins, minerals, antioxidants, and essential fatty acids from the food she ate rather than pills and supplements. Dr. Wahls adopted the nutrient-rich paleo diet, gradually refining and integrating it into a regimen of neuromuscular stimulation. First, she walked slowly, then steadily, and then she biked eighteen miles in a single day. In November 2011, Dr. Wahls shared her remarkable recovery in a TEDx talk that immediately went viral. Now, in The Wahls Protocol, she shares the details of the protocol that allowed her to reverse many of her symptoms, get back to her life, and embark on a new mission: to share the Wahls Protocol with others suffering from the ravages of multiple sclerosis and other autoimmune conditions.

I'd like to add that the most relief I've gotten from my symptoms is from modifying my diet and taking specific probiotics.

 

[arty0mk]

Foods, diets, supplements, sleep protocols, methylation, exercise, positive thinking, etc do not cure complex disease.

You are very, very wrong. I've been an admin of a large (20k+) raw food diet forum for over 6 years. In these 6 years I've encountered many cases of people curing complex diseases by radically changing their diet and/or way of life. Diseases like (off the top of my head): asthma, various allergies, diabetes, arthritis, infertility, polycystic ovary syndrome, obesity; schizophrenia, autism, ADHD, dyslexia (in young children), even early melanoma and cancer! Actual, officially diagnosed cases. A friend of mine (around 50 years old now) has been diagnosed with cancer (I don't remember the type), but he has been diagnosed by various specialists and told that nothing could be done and he had about 1-2 years tops. He was prescribed some medication that could somewhat prolong his life, but he told that it felt worse then early death. Instead he went 100% strict raw vegan and now, 15 years later he is alive and well, and there is no sign of cancer in his body. He has become profoundly religious after this.

During these years I saw an even greater number of people totally dismissing these cases, calling these people liars, their doctors incompetent, their diagnosis wrong etc. Which doesn't change the fact that I've seen numerous cases of complex illnesses cured by a change in diet alone. Don't underestimate it. It's one of the most powerful tools at our disposal.

 

[Valentijn]

In these 6 years I've encountered many cases of people curing complex diseases by radically changing their diet and/or way of life.

Perceptions are very often clouded by bias. This is why trials are necessary, and we cannot rely on "this is what I think I see."

In the case of ME/CFS, such trials involving SSRIs and/or GET have proven that your perceptions in this case are wrong. Such measures do not produce any objective improvements in ME/CFS patients.

 

[JPV]

Perceptions are very often clouded by bias. This is why trials are necessary, and we cannot rely on "this is what I think I see."

You sure seem to have a lot of faith in a corrupt and flawed system. I for one could care less about clinical trials. N=1 is the only thing that I've come to trust anymore...

Clinical Trials Flawed by Biased Reporting

Randomized placebo-controlled clinical trials are the gold standard for demonstrating the efficacy and toxicity of new treatments and drugs, but according to a new study, most of them are compromised by poor or biased reporting of benefits and harms.

 

[JPV]

Right. "Science Bad, Believe Me Instead"? No thanks.

Yes, because science is so trustworthy...

Corruption Is Destroying Basic Science

Lancet and the New England Journal of Medicine are the two most prestigious medical journals in the world.

It is therefore striking that their chief editors have both publicly written that corruption is undermining science.

The editor in chief of Lancet, Richard Horton, wrote last month:

Much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness. As one participant put it, “poor methods get results”. The Academy of Medical Sciences, Medical Research Council, and Biotechnology and Biological Sciences Research Council have now put their reputational weight behind an investigation into these questionable research practices. The apparent endemicity [i.e. pervasiveness within the scientific culture] of bad research behaviour is alarming. In their quest for telling a compelling story, scientists too often sculpt data to fit their preferred theory of the world. Or they retrofit hypotheses to fit their data. Journal editors deserve their fair share of criticism too. We aid and abet the worst behaviours. Our acquiescence to the impact factor fuels an unhealthy competition to win a place in a select few journals. Our love of “significance” pollutes the literature with many a statistical fairy-tale. We reject important confirmations. Journals are not the only miscreants. Universities are in a perpetual struggle for money and talent, endpoints that foster reductive metrics, such as high-impact publication. National assessment procedures, such as the Research Excellence Framework, incentivise bad practices. And individual scientists, including their most senior leaders, do little to alter a research culture that occasionally veers close to misconduct.

 

[roller]

hahaha... i find this so funny to swing the "science axe" over a "syndrome".

also, that @Valentijn is talking about "healing" or "cure".

whatever pathogens are the cause, there will be no cure nor a healing.
there can be improvement. the attempt to keep things under control - at best.

whatever you have, you cant get rid of. we just dont have that sort of medication yet. it goes into hiding and is waiting to come back again - and it will. all those bacteria, viruses and helminths are out there - basically everywhere. they belong to this world and most are much older than us.

what we have is nothing out of this world. its everywhere.

and very likely, this syndromes appear to be highly individual.
they may have similar causes, but their outcome, the symptoms and most likely their treatment seem individual.
as its even impossible to find the cause, an individualized treatment we may rule out for the distant future even.

this is about damage limitation - for all.
autists, adhds, CFS, ME, multiple sclerosis, pulmonary hypertension, IBS and and and...
and personally, i dont believe we are "far apart" in our causes.

and no help is out there.
though, some research yes. staggerings through the fog.

 

[A.B.]

Valentijn is providing valuable information. Anecdotes about curing a wide variety of diseases with diet changes are not credible, and I think you should take time to understand why. That research often has credibility issues doesn't make anecdotes any more reliable.

 

[JPV]

Valentijn is providing valuable information. Anecdotes about curing a wide variety of diseases with diet changes are not credible, and I think you should take time to understand why.

Sorry, you're just plain wrong and I think you should take the time to understand why...

An MS-Stricken Doctor Changes Her Diet... and Reverses Her 'Irreversible' Decline

Wahls turned to the ancient healing remedy of food, completely transforming her diet. Remarkably, her fatigue lessened, and she was soon sitting up -- and walking. Five months later, she got on a bicycle, eventually riding for long distances.

Wahls is eager to spread the word that food is powerful medicine. She is currently writing a book about her remarkable experience, The Wahls Protocol, scheduled for publication in 2014. In the meantime, anyone with MS, another autoimmune condition, or who simply wants to improve their health can benefit from her experience, which also included neuromuscular electrical stimulation and exercise.

 

[arty0mk]

Anecdotes about curing a wide variety of diseases with diet changes are not credible, and I think you should take time to understand why.

Experiences of other people should not be disregarded completely either. Many people got better by trying out what has worked for others. Studies and anecdotal evidence are two sides of a whole and both have their place. Anecdotal evidence is the basis for future research and discoveries. The scientific method is not some enigma, it just means experimentation. Make a hypothesis, carry out an experiment, observe the result, repeat; make a conclusion, modify the hypothesis as needed, repeat the experiment; compare with experiments carried out by others etc. This is how anecdotal evidence has it's place in the scientific method. Disregarding it completely is a mistake. All the well documented theories of today were born by some keen mind trying out something that was not widely accepted, often relying on anecdotes.

 

[A.B.]

Experiences of other people should not be disregarded completely either. Many people got better by trying out what has worked for others. Studies and anecdotal evidence are two sides of a whole and both have their place. Anecdotal evidence is the basis for future research and discoveries. The scientific method is not some enigma, it just means experimentation. Make a hypothesis, carry out an experiment, observe the result, repeat; make a conclusion, modify the hypothesis as needed, repeat the experiment; compare with experiments carried out by others etc. This is how anecdotal evidence has it's place in the scientific method. Disregarding it completely is a mistake. All the well documented theories of today were born by some keen mind trying out something that was not widely accepted, often relying on anecdotes.

Agreed. You made an explicit claim about recovery though. That's going too far. You would need a clinical trial to find out whether these recoveries were actually recoveries, and whether they were due to dietary changes or some other factor that happened to occur at the same time.

 

[A.B.]

People also tend to underestimate how easy it is to arrive at a false appearance of improvement. This study is a good example. Note how a placebo or sham acupuncture appears effective while not actually improving the underlying illness compared to doing nothing at all:

Active Albuterol or Placebo, Sham Acupuncture, or No Intervention in Asthma

http://www.nejm.org/doi/full/10.1056/NEJMoa1103319#t=article

 

[Mij]

@arty0mk have you had any other testing done? besides sending your hair for analyst. cortisol? thyroid? immune profile?

 

[arty0mk]

Agreed. You made an explicit claim about recovery though.

At some point coincidences become evidence. Take from my story what you will.

 

[arty0mk]

@arty0mk have you had any other testing done? besides sending your hair for analyst. cortisol? thyroid? immune profile?

I've done the extended general blood work panel, or whatever it's called. Not sure I can find the results at this point, but a few thyroid hormones were there, some immune profile values too. Were all normal. I asked for a separate cortisol test, because I think that's what's causing my insomnia and drowsiness in the morning, but the doc laughed at me, saying something along the lines of you are way too young for your cortisol to be out of balance and suggested that I was spewing nonsense.

 

[arty0mk]

Also a DNA test via "23 and me".

 

[Valentijn]

This is how anecdotal evidence has it's place in the scientific method.

And in the scientific method, anecdotal evidence is at the bottom of the pile. Because as human beings, we are inherently subject to bias. We look for things which confirm our beliefs, and we find ways to reject things which contradict our beliefs.

The scientific method acts to help minimize the influence of this bias in results. In the case of ME/CFS research, investigators who are completely committed to showing GET to help patients have failed to do so. On the contrary, they have shown that even patients who show no objective improvement will still report that they are improved, due to specific types of bias.

Disregarding it completely is a mistake.

No one disregards anecdotal evidence entirely. It is merely inferior to scientific evidence. And in this case, the anecdotal claim that exercise helps your "possible CFS" is contradicted by a much huger mass of anecdotal evidence from patients saying that exercise makes them very ill, even when carefully and gently introduced. This anecdotal evidence has been collected in the form of large surveys done by ME/CFS charities.

At some point coincidences become evidence. Take from my story what you will.

Again, the evidence you believe you are seeing is an indication of perceptual biases, not the amazing ability of nutrition, exercise, and an SSRI to cure complex disease.

I hope you do not think that I am making an accusation when I say you are perceiving things in a biased manner. It is a human failing which everyone is subject to, and that is the reason that many of us have greater faith in rigorously conducted science than we do in anecdotal evidence.

 

[arty0mk]

Now that I thought about it, the only values that were out of the norm on the blood test were: a little below normal haemoglobin, slightly elevated creatinine and sligthly above normal cholesterol (don't remember which). I attribute creatinine and cholesterol to me being on a paleo diet back then.

Also found this: