Keeping Up with Research 

Ever been amazed by how some people always seem to know what’s going on with the latest advances in research and testing for their particular disorder? Want to be one of those people? You can spend everyday googling, going to pubmed and the NIH performing keyword searches and hoping you come up with the latest information, or you can just do what I do; have someone else perform your keyword searches and deliver your results to your inbox daily.

I use Stork. Stork is a very simple service that only requires a few moments to sign up for and complete the process of choosing the keywords you’d like them to sniff out. Simply follow this link and the very simple prompts to complete the process.

Not sure what keywords to choose? Consider what’s most important to you. If you suffer from fibromyalgia, POTS, and migraines, you might start out with keywords that look something like this:

  • Fibromyalgia
  • Chronic fatigue
  • Widespread pain
  • Pain syndromes
  • Postural Tachycardia Syndrome
  • Orthostatic Intolerance
  • Migraines
  • Migraines with Aura
  • Chronic head pain

Once you begin receiving your Stork reports, you may decide that some of these terms don’t return results that you’re interested in seeing. That’s okay. You can simply return to the site using the link above, login and adjust your keywords at anytime by adding and deleting anything you like.

As you can see from the list above, you can follow researchers as well as topics, which can be helpful when you know of a researcher that specializes in certain conditions or aspects of a condition and want to make certain you don’t miss the results of their work. There’s even more Stork can offer, so take a look around and get to know this powerful tool. Part of staying healthy is staying informed!


Dietary Changes to Improve Every Spoonie’s Health, Pt. 2

Or yourself!

When I wrote part 1 of this article and spoke about the known effects of glyphosate (aka roundup) in the body and the possible effects, I couldn’t find any studies to back up my suspicions that glyphosate and other herbicides and pesticides like it are contributing to the major uptick in autoimmune, connective tissue and neurodegenerative diseases in our world. Well, I just found it. This review of studies completed as far back as 2013 found a huge body of evidence that links the use of these chemicals to the growing rates of chronic disease. Check out the abstract below:

Where did I find this study? Among hundreds listed by Enter at your own risk, for you will likely be spending hours reading horror after horror of the effects on glyphosate and other herbicides and pesticides on many a living creature, appalled that you’ve ever been tricked into injesting the carcinogenic, neurodegenerative, mRNA decaying, infertility and birth defect causing stuff. There is literally not a system it doesn’t effect, including our precious microbiomes and DNA. But seriously, at least read through some of the study names. The list is an amazing indictment of the stuff.

I don’t care how little your SSDI check is, no one can afford the vost to their health to eat this stuff. If you aren’t carefully screening everything you purchase and put in your mouth, you are ingesting it, right down to your tap water. Not sure what’s in your tap water? Check EWG’s tap water database to find out. Then get the appropriate water filtration system to protect your health. I’d even question your bottled water as much if it’s purported to be unfiltered tap water purchsed from major municipal water sources like my own which happens to have umsafe levels of lead, hexavalent chromium, nitrates, trihalomethanes, and 1,4-dioxane, just to name a few. I’m not a fan of bottled water in the first place for all the waste, no matter what kind of container it comes in.

At the grocery, be sure to check labels and watch the news for companies who have been caught scamming the public by getting certified as organic and GMO-free who aren’t keeping up with those promises, primarily those resold under your grocer’s labels. The absolute worst offenders are wheat, corn and soy, but glyphosate is used on almost everything in conventional farming and conventional animal products too come with a heaping helping of glyphosate due to their feed.

To avoid it, buy certified organic produce and grass fed organic and heritage raised meats and make your own foods from whole ingredients whenever possible. Avoid eating at restaurants that don’t practice the same things that you do at home.

Eliminating these things from my diet helped me somewhat to feel better and reduce some of the neurological effects of these toxins, but I saw my biggest strides by detoxing and repairing tge damage. I did this by taking curcumin and glutathione for a year to cleanse the toxins and help heal the mitochondrial damage. I also believe taking acytl-l-carnitine helps some in this department, by slowing the decay of mRNA and allowing it fuel to aid in repair. I still continue to take the acytl-l-carnitine as I always see an uptick in my symptoms when I attempt to quit, so it does something more (perhaps helps keep the constant damage of untreated chiari or CCI at bay?), but I’m not chemist enough to understand exactly why it helps keep my nerve pain and migraines at bay. I just know it does.

Anyway, I covered most of this stuff in my first article here, but I wanted to present my new findings and emphasize the importance of getting this stuff out of your diet. I feel very strongly that diet contributes so much to the quality of life one can expect to have with an autoimmune illness and it should be everyone’s first line of defense. Once you begin eating right and repairing the damage, you might find just like me, that you have a real chance of living a semi-normal, comfortable life.

Neurontin/Lyrica Block Formation of Synapses in Brain


As I know MANY spoonies who are on Neurontin or Lyrica, I wanted to put this out the second I saw it (see below). I took it myself on two separate occasions and felt within a short period both times that the drugs were doing more harm than good for myself, even though they dulled a great deal of the pain I was feeling at the time. If you’re on these drugs, I would consult with your physician right away. Personally, I myself stick with holistic medications which heal and generate new healthy tissue. It works. You should check it out.


January 8, 2017 by Posted in: Uncategorized

BY: Byron J. Richards, Board Certified Clinical Nutritionist

Neurontin and its newer more potent version, Lyrica, are widely used for off-label indications that are an outright flagrant danger to the public. These blockbuster drugs were approved for use even though the FDA had no idea what they actually did in the brain. A shocking new study shows that they block the formation of new brain synapses1, drastically reducing the potential for rejuvenating brain plasticity – meaning that these drugs will cause brain decline faster than any substance known to mankind.

The problem of these drugs is compounded by their flagrant illegal marketing. Neurontin was approved by the FDA for epilepsy back in 1994. The drug underwent massive illegal off-label promotion that cost Warner-Lambert 430 million dollars (the very first big fine for off-label promotion). The drug is now owned by Pfizer. Pfizer also owns Lyrica, a super-potent version of Neurontin. It has been approved by the FDA for various types of pain and fibromyalgia. Lyrica is one of four drugs which a subsidiary of Pfizer illegally marketed, resulting in a $2.3 billion settlement against Pfizer.

Even though the marketing of these drugs has been heavily fined, they continue to rack up billions in sales from the off-label uses. Doctors use them for all manner of nerve issues because they are good at suppressing symptoms. However, such uses can no longer be justified because the actual mechanism of the drugs is finally understood and they are creating a significant long-term reduction in nerve health.

The researchers in the above study try to downplay the serious nature of the drugs by saying “adult neurons don’t form many new synapses.” That is simply not true. The new science is showing that brain health during aging relies on the formation of new synapses. Even these researchers managed to question the common use of these medications in pregnant women. How is a fetus supposed to make new nerve cells when the mother is taking a drug that blocks them?

These are the kind of situations the FDA should be all over. As usual, the FDA is sitting around pondering a suicide warning for Lyrica while its off-label uses include bi-polar disorder and migraine headaches. The FDA is likely to twiddle its thumbs for the next decade on the brain damage issue. Consumer beware.

NIH Releases FAQ on Hereditary Alpha Tryptasemia 

If you read the article I shared about the discovery of the new disease hereditary-a tryptasemia, then you’re probably wondering if you can go to the doctor to be tested for it. According to a FAQ released by the NIH, there is no commercially available test to confirm the multiple copy DNA strands which cause the disease. However, they have provided a guideline for tryptase levels, combined with the existence of common symptoms that still make diagnosis possible.

Several features that may be shared among those who have hereditary alpha tryptasemia syndrome are multiple symptoms affecting a variety of systems including (but not limited to) these:

  •     Chronic skin flushing, itching, or hives
  •     Bee sting allergy
  •     Dizziness and/or difficulty maintaining a normal pulse and blood pressure, sometimes diagnosed as dysautonomia or postural orthostatic tachycardia syndrome (POTS)
  •     Chronic head, back, and joint pain
  •     Hypermobile joints, scoliosis, retained primary teeth or other skeletal abnormalities, sometimes diagnosed as Ehlers-Danlos syndrome, Type III, hypermobile type
  •     GI disturbances including heartburn, IBS, and numerous food and drug reactions and intolerances
  •     Anxiety, depression, and/or behavioral disturbances.

Patients who suspect they may have hereditary alpha tryptasemia syndrome should first have a baseline blood tryptase test drawn by their doctor, if they haven’t already. It should not be drawn immediately after a major allergic reaction, as that can lead to an elevated tryptase for a different reason. A serum level greater than 10 ng/ml is suggestive of alpha tryptasemia, while a level lower than 8ng/ml makes this diagnosis far less likely.

While the document puts an emphasis on the fact that there are currently no developed treatments for hereditary-a tryptasemia, knowledge is always power in the right hands and could help you and your care providers come up with new ideas about your care. After all, hereditary-a tryptasemia is not the only thing that creates tryptase production issues, so perhaps a knowledgeable physician will have some bright ideas.

The full FAQ can be found here.

End GET trials on Children and Adults w/ ME/CFS


Be sure to stop over at #MEaction and sign their petition to stop Graded Exercise Therapy trials being performed in the UK on children and adults. In light of the analysis performed on the full data that was finally released, it is inhumane and completely without value to continue subjecting people with ME/CFS to such trials. Not only was the PACE trial itself a failure that was hidden for years, many subsequent studies have additionally shown poor or even harmful results stemming from this therapy.

If you are a citizen of the United Kingdom, sign the UK PARLIAMENT PETITION

If you are a citizen of any other country, sign the GLOBAL SUPPORT PETITION

PACE Trial Data Released

Republished from QMUL Releases the PACE DATA

Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order.

The move follows the publication three days previously of an open letter from a group of scientists including Dr. Ron Davis, Vince Racaniello and Jonathan Edwards, urging QMUL’s principal, Professor Simon Gaskell, not to appeal the tribunal’s decision.

The data was requested in March 2014 by Alem Matthees, in order to allow the calculation of the trial’s main outcomes and recovery rates according to the methods specified in the trial’s original protocol. The original analysis methods were abandoned once the trial was underway and replaced by others, including an analysis in which patients could become more disabled and yet be classed as having “recovered”.

Tom Kindlon, a patient whose criticism of PACE’s analyses has been published in medical journals, said, “This is a great day for patients. We’ve waited years for this. Finally, it’s going to be possible for independent parties to scrutinise the data and, in particular, find out what the results would have been without all the unjustified changes to the study protocol. Looking at how the objective data relate to the subjective outcomes will also be very interesting.”

“This was a publicly funded trial and cost £5 million in taxpayers’ money — the data should never have been kept secret.”

-Tom Kindlon

He added, “This was a publicly funded trial and cost £5 million in taxpayers’ money — the data should never have been kept secret. It is very disappointing that both the PACE Trial investigators and QMUL fought the case so hard, forcing Alem Matthees to have to put in so much work when he is not well himself, and dismissing some other requests for basic information.”

The day before the data was released, the PACE authors published online the main results for the trial using the original protocol-specified methods. The new results show that only a third as many patients improved according to the protocol-defined analysis, compared to the numbers reported in The Lancet in 2011.

The results confirm suspicions long-held by patients and scientists who have studied the trial critically that if the PACE investigators had stuck to their own original analysis protocol, PACE would have appeared to be a far less successful trial.


The new results show that only 21% of patients were classed as “improvers” in the graded exercise therapy group, compared to the 61% claimed in the Lancet paper using an analysis developed after the trial was under way. 10% of patients in the group that received no therapy were “improvers”, indicating that, even with the subjective measures used, only one patient in ten reported improvement from the addition of graded exercise therapy. Results for the CBT group were similar to those for the graded exercise group.

These re-interpreted results were released without fanfare on QMUL’s own website. Despite the dramatic fall in improvement rates, the study authors said that the outcomes were “very similar to those reported in the main PACE results paper” and supported their Lancet conclusion that CBT and graded exercise, added to standard medical care, “moderately improve” outcomes for CFS patients.

But journalist and public-health expert Dr. David Tuller, of the University of California, Berkeley, who has criticized the trial in detail, said, “Let’s be clear. These findings are really much worse than those presented in published, ‘peer-reviewed’ papers. If these were the best findings for $8 million, then PACE really will not survive legitimate scrutiny.”

But now, with the original, raw data going to Alem Matthees, a more independent review is sure to follow.

Over the past several months, following the first of Dr. Tuller’s critical articles, patients and scientists have joined together all over the world to put pressure on QMUL to release the data. A petition led by #MEAction with over 12,000 signatures was featured in the Wall Street Journal, and was presented at the tribunal as evidence of the level of public interest in data release; and 24 ME/CFS organisations in 14 countries, representing tens of thousands of patients, wrote open letters to the university.  L.A. Cooper, head of #MEAction Network UK said, “Our thanks go out to Alem Matthees, who worked incredibly hard to achieve the release of the PACE data at what was almost certainly enormous physical cost.  Thank you, Alem!”

Source: QMUL releases the PACE data

Japan: fatigue biomarkers show difference between chronic fatigue syndrome and ordinary fatigue

hhv-6_inclusion_bodiesTake a gander at the exciting news from ME Australia! Japanese researchers have found a biomarker for ME/CFS that also proves that our fatigue IS PATHOLOGICAL and not somehow psychological. They also did the same for major depressive disorder. This is going to set the world of ME/CFS research on fire and I look forward to witnessing the chain reaction.

Of course it’s important to understand that it doesn’t tell us what causes CFS or point us toward a cure. It isn’t even “the biomarker” to end all biomarkers, because it behaves the same way with other conditions, therefore it doesn’t exclude them, but it is actual, verifiable, scientific, diagnostic criteria. Combining biomarker testing with existing criteria  would make for much stronger, more accurate diagnosis. I wager it would also be much more affordable than the ideas surrounding imaging that are currently underg oing testing and could work well as a precursor to such tests.

For more specifics, read on:

Researchers in Japan measured salivary human herpesvirus HHV-6 and HHV-7 and found they can be used as biomarkers to tell the difference between physiological (recovers with rest) fatigue and pathological fatigue.

In healthy people, HHV-6 and HHV-7 increased with training and work then rapidly decreased with rest. In people with chronic fatigue syndrome (CFS Fukuda criteria), obstructive sleep apnea syndrome and major depressive disorder, HHV-6 and HHV-7 did not increase.

Source: Japan: fatigue biomarkers show difference between chronic fatigue syndrome and ordinary fatigue


Hope for multiple sclerosis cure as 23 seriously ill patients recover after ‘breakthrough’ stem cell treatment 

Jennifer Molson skis after recovering from MS Credit: The Ottawa Hospital

Multiple sclerosis patients who were severely disabled are walking, working and even downhill skiing again following a breakthrough therapy which completely destroys, then rebuilds, the immune system.

The trial, which is the first in the world to show complete long-term remission from the debilitating disease has been hailed by experts as ‘exciting’ ‘unprecedented,’ and ‘close to curative.’

Although it is unclear what causes MS it is thought that the immune system attacks the protective coating which surrounds nerve cells in the brain and spinal cord leading to inflammation, pain, disability and in severe cases, early death.

The new technique, which is a treatment usually used to fight leukaemia, involves using chemotherapy to entirely eradicate the damaged immune system, before rebooting it with a transfusion of bone marrow cells.

Out of the 24 patients who were given the treatment at least seven years ago, the majority have seen significant improvements . 70 per cent of patients saw a complete stop to the progression of the disease, while 40 per cent saw a reversal in symptoms such as vision loss, muscle weakness and balance loss.

“Our trial is the first to show the complete, long-term suppression of all inflammatory activity in people with MS,” said Dr Harold Atkins, a stem cell transplant physician and scientist at The Ottawa Hospital, and associate professor at the University of Ottawa.

“A variation of this procedure has been used to treat leukaemia for decades, but its use for auto-immune diseases is relatively new.

“This is very exciting. However, it is important to note that this therapy can have serious side effects and risks, and would only be appropriate for a small proportion of people with very active MS.”

During the trial one participant died of liver failure due to the treatment and another required intensive care for liver complications.

Dr Emma Gray, Head of Clinical Trials at the MS Society, said: “This type of stem cell transplantation is a rapidly evolving area of MS research that holds a lot of promise for people with certain types of MS.

To continue reading and watch a video on the same subject, click here.

It’s obviously early to hail this as a total success, but it is fabulous news for some multiple sclerosis sufferers. It might also be great news for sufferers of other autoimmune diseases. Imagine the endless possibilities that the discovery of such a successful therapy could hail for autoimmune diseases in general. With time and work, it’s possible this therapy could be modified and perfected for a number of autoimmune illnesses with severe and life threatening prognoses.

As a person who has battled ME/CFS for the last 15 years, I can’t help but wonder if this might eventually be tested on those in the severe category. Many people with ME/CFS lose their lives in the battle against this illness and stem cell therapies are only one of a few possibilities to create remission in patients with the illness.



Hot Weather Increases Pain in Chronic Illness

According to this article, several studies have proven that the weather does indeed affect the health of many people with chronic illnesses such as rheumatoid arthritis, chronic fatigue syndrome/myalgic encephalomyelitis, multiple sclerosis, fibromyalgia, and others.

Big surprise. It hasn’t been “all in your head” all this time.

The article also provides a few helpful hints on how to keep the summer sun from spiking your pain levels right along with the thermometer.

Get the full scoop here

Fibromyalgia and Loss of Grey Matter

How my brain feels after writing a blog post!

According to a recent review of studies called Relations between brain alterations and clinical pain measures in chronic musculoskeletal pain: A systematic review, based on patients suffering widespread chronic musculoskeletal pain (MSKP);

Moderate evidence demonstrates that higher pain intensity and pressure pain sensitivity are related to decreased regional grey matter (GM) volume in brain regions encompassing the cingulate cortex, the insula and the superior frontal and temporal gyrus. Further, some evidence exists that longer disease duration in fibromyalgia is correlated with decreased total GM volume. Yet, inconclusive evidence exists regarding the association of longer disease duration with decreased or increased regional GM volume in other chronic MSKP conditions. Inconclusive evidence was found regarding the direction of the relation of pain intensity and pressure pain sensitivity with microstructural white matter and functional connectivity alterations

These differences were found through the use of MRI imaging. Since all that is available of this review is the abstract which lacks any concrete details about the particular studies reviewed such as the number of patients included in the study, the criteria on which patients were chosen, use of controls, and specific data points, it’s difficult to make any point by point comparisons. Of course, the biggest flaw, which the review authors point to, is  whether or not the loss in GM is definitively correlated to the clinical pain measures itself;

…preliminary to moderate evidence demonstrates relations between clinical pain measures, and structural and functional connectivity alterations within brain regions involved in somatosensory, affective and cognitive processing of pain in chronic MSKP. Nevertheless, inconclusive results exist regarding the direction of these relations. Further research is warranted to unravel whether these brain alterations are positively or negatively correlated to clinical pain measures.

Given that the brain is what translates what the body feels, it’s impossible for it not to be related, so to speak. Even Jarred Younger points this out in his video, here.  But they are right, that doesn’t necessarily mean that there is an absolute cause and effect relationship between pain, pain levels and the grey matter loss experienced in patients. It is important to know that it’s happening though, and whether or not it’s progressive with the length and/or severity of the disease.

I am very intrigued by the results and its many possible implications. First of all, grey matter loss can contribute to a number of symptoms; pretty much if you can name them, you can blame them on grey matter loss, most especially the cognitive dysfunction and memory loss that I seem to have at a stellar level. My MRI from 2.5 years ago was clear, but who knows now?

This could also indicate that fibromyalgia and myalgic encephalomyelitis are two separate illnesses, as grey matter volume seems only to decrease in some ME/CFS patients and not others and perhaps only after a certain duration or length of severity, from what I’ve read, though admittedly I’m not expert and I’ve certainly not read every study out there.

I do wish those who had reduced grey matter in such studies had been tested for fibromyalgia. Based on the recent microglia discoveries through PET observations made by Fukuda, the primary enemy in ME/CFS seems largely to be brain inflammation (or perhaps whatever is causing that inflammation).  I myself have seen a significant decrease in symptoms by controlling that inflammation with curcumin, though there’s certainly still room for improvement.

Finally, this grey matter shrinkage should also be of great concern because of the connection between it and Alzheimer’s disease. We should be asking ourselves and most certainly asking the powers that be why there haven’t been more questions raised about the similarities between these two diseases.

Since there are a number of patients like myself who are eventually diagnosed with both illnesses based on distinct and separate criteria, one must wonder if the effects of one might possibly “kick off” the other, or if perhaps there is something in the patient’s genetics, environment (viral, chemical or otherwise) that creates the perfect conditions for development of both of these neurological diseases. My mother and my former partner were both diagnosed with fibromyalgia as well as myself. Can it really just be a coincidence?

So many questions. So few answers. I’d be scratching my head, but it’s throbbing too much after all this thinking and writing!