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Ehlers-Danlos Syndrome and Autism

By |2019-10-08T17:07:13+00:00October 7th, 2019|

Follow @beeheron Ehlers-Danlos Syndrome and Autism Reading time: 8 minutes 15 seconds Summary A 2018 study found that a certain type of connective tissue cell called a myofibroblast was found in high quantities in the skin of people with hypermobility type EDS (hEDS), but not in other types of EDS. This cell is induced by inflammation and also by mast cells and has certain properties that could give rise to joint laxity. hEDS is also linked to a markedly increased risk of autism.  Read on for links between these two conditions. Autism & hEDS The geneticist who diagnosed me with hypermobility type Ehlers-Danlos Syndrome (hEDS) happened to help collect DNA for genetic research.  He supplied DNA samples for research into the origin of hEDS but also saw many autistic pediatric patients and collected samples from them for separate research into autism. He casually mentioned that many of his autistic pediatric patients had parents with hypermobile joints and many adults he diagnosed with hEDS had children with autism. Indeed, a 2016 study published by Swedish and American researchers estimated that people with hEDS had 7.4 times the risk of being autistic.  In my family, we have many people who function well in many respects and are successful with their work, but who also have autistic traits. Hypermobility is rife on both sides of my family. The Broad Autism Phenotype The broad autism phenotype or BAP encompasses the idea that people, especially family members of autistic people, may themselves have milder autistic traits. This mild version of autism is also known as an intermediate phenotype.  In one study, parents of autistic children were assessed for six personality traits: aloof, anxious, hypersensitive, overly conscientious, rigid, and untactful. These [...]

Could Fisetin Be A New Treatment For ME/CFS & Autism?

By |2019-10-08T16:55:35+00:00July 23rd, 2019|

Follow @beeheron Could Fisetin Be A New Treatment for ME/CFS and Autism? Reading time: 4 min 46 sec In my very first post on this site, I reported that I have a remarkable response to high dose biotin.  It reduces my ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) symptoms like severe fatigue and the mental confusion that people with ME/CFS call brain fog.  It also reduces my autistic symptoms, relieving anxiety and irritability while improving my ability to read people. A natural substance called fisetin gives me similar but better results and fisetin’s effects can last for days and possibly weeks for me. On high dose biotin, I relapse badly if I miss a twice daily dose.  I have switched from biotin to fisetin because fisetin seems to improve the function of my brain and body for longer periods of time. Fisetin is found in many fruits in vegetables, but is found in the highest quantities in strawberries. Fisetin helps pull me out of post-exertional malaise.  As a mild ME/CFS patient, I could historically expect to get a few days to a couple of weeks of postexertional malaise after mild exercise like moderate digging in my garden. With fisetin, I am able to dig significantly more without a problem and recover more quickly when I overdo it.  Things like going on a bike ride around the block will trigger about 2 days of PEM instead of 5 or 7.  Not a panacea, but an improvement. Day to day, in the absence of attempting to exercise, I am so much clearer and sharper mentally. My memory and focus is so much better and I feel less physically weak and forgetful. Like a lot of autistic people and like many people with my connective tissue disorder, Ehlers-Danlos syndrome, I deal with a [...]

Low Blood Volume, ME/CFS and Slow, Chronic Sepsis

By |2019-10-08T16:58:42+00:00May 17th, 2019|

Follow @beeheron Low Blood Volume, ME/CFS and Slow, Chronic Sepsis Summary A very common cause of sepsis is the leakage of bacteria into the blood from the gut. ME/CFS patients have signs of leakage of bacteria from the gut into the blood and our illness looks a lot like sepsis. Low blood volume and mast cell activation may have everything to do with this process. Reading Time: 2 min 27 sec Previous Article: Mast Cell Activation Syndrome & Low Blood Volume In a 2018 paper, Dr. Maureen Hanson’s group conducted a study on microbiota and ME/CFS patients.  The microbiota is the collection of microorganisms that live in the gut. Hanson’s team found that a substance called LPS was significantly elevated in the blood of patients. LPS is a substance from the cell walls of certain bacteria.  LPS becomes elevated in the blood when there is an increased permeability or leakiness of the intestines. Other researchers have had similar findings with regard to LPS and ME/CFS patients. Dr. David Bell, a longtime ME/CFS physician and member of the Open Medicine Foundation has compared ME/CFS to a slow, chronic version of sepsis.  The commonalities between these two conditions include low blood pressure, low blood volume, a loss of energy production at the cellular level, and widespread inflammation. LPS, from either a bacterial infection or a damaged or leaky gut, is the most common cause of sepsis, a body-wide inflammatory disorder that kills 40% of its victims. LPS is a powerful trigger of inflammation and, because it spreads through the blood, it can cause inflammation all through body. At the most recent Open Medicine Foundation Symposium, Dr. Bell’s book on this subject was held up in front of the audience and the speaker said essentially that [...]

Mast Cell Activation Syndrome & Low Blood Volume

By |2019-10-08T16:59:15+00:00May 15th, 2019|

Follow @Beeheron Mast Cell Activation Syndrome & Low Blood Volume Summary Two symptoms occur frequently in people with ME/CFS: Mast Cell Activation Syndrome (MCAS) and low blood volume. What if these are not coincidental? Reading time: 4 minutes 27 seconds People with ME/CFS have less blood than we should. We have low blood volume. We also tend to have a condition called mast cell activation syndrome or MCAS. I think these may not be two separate events. I think they may be closely linked. MCAS stands for mast cell activation syndrome. Mast cells act as sentinels that detect injuries, infectious agents, decrements in blood supply or other changes in the body. They are early or first responders to many potentially dangerous situations. In MCAS, mast cells become hypersensitive and chronically active.  Somehow they start to identify innocuous things like common foods, hot weather, smells, normally safe chemicals or even sunlight as dangerous. Chronically activated mast cells are a problem because mast cells release a roster of bad actors that would make anyone feel sick. In my experience, my MCAS is inseparable from my ME/CFS because reactions to foods reliably provoke all of my ME/CFS symptoms. When I got ME/CFS as a teenager, I got MCAS. If doctors had known what they were looking for, I would have immediately been identified as an MCAS patient. I flushed hot all the time in my face and ears and started getting hives like giant mosquito bites on my face. This happened every time I ate, for hours afterwards, every day. When I developed ME/CFS, I also developed disturbingly low blood pressure and had trouble holding myself upright for any length of time. This is called orthostatic intolerance. Recent research has shown that while ME/CFS patients overall tend [...]

Shock, Hypoxia & ME/CFS: Part II

By |2019-10-08T16:59:45+00:00March 13th, 2019|

Follow @beeheron Shock, Hypoxia & ME/CFS: Part II Summary Numerous lines of evidence implicate problems with blood flow or oxygen delivery in ME/CFS. HIF-1 is the master regulator of the body's response to diminished oxygen delivery and is upregulated under low oxygen conditions. HIF-1 downregulates mitochondrial energy production and upregulates glycolysis in an effort to protect cells from the adverse effects of oxygen deficit. In a chronic low oxygen state, chronically elevated HIF-1 could account for a low metabolic state resembling hibernation, could account for “deconditioning” and could account for post-exertional malaise (PEM). We will take a look at models of chronically elevated HIF-1 as well as genetically reduced levels of HIF-1. In addition, chronically elevated HIF-1 could potentially be related to increased rates of cancer and autoimmunity in ME/CFS. Ron Tompkins, HIF-1 and Trauma Dr. Ron Tompkins, MD, ScD, is one of our researchers on the scientific advisory board of the Open Medicine Foundation (OMF). He is chief of the Trauma, Burns and Surgical Critical Care Service at the Massachusetts General Hospital, chief of staff at the Shriners Hospitals for Children in Boston and a professor of surgery at Harvard Medical School.  We are so incredibly blessed to have people like Dr. Tompkins working to find answers for ME/CFS patients. Dr. Tompkins specializes in finding new ways to treat patients who have suffered burns and major injuries. These critical injuries are collectively known as trauma. Interestingly, he thinks there may be a connection between trauma and ME/CFS. On his OMF page, it says: “There seems to be a relationship between trauma and ME/CFS, possibly being triggered by or putting the body into a constant state of trauma.” This is an interesting statement because trauma involves bodily injury, but also involves circulation problems [...]

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