This letter as document with all links active
Thanks for reading this letter, I Hope it finds you all well and happy! In this age of fractured focus reading this in it's entirety though it is long, means a quintuple as much to me. If you find parts boring though, do feel free to skip around (as I often do with long non fiction works). As you will ascertain by the dated references that this letter took longer to complete than expected, as it was a difficult month for me, with 90% of my time spent sleeping, and during waking hours having little focus. In a month I had three good days where I was both awake and focused, hence the tardiness of the letter. That, and the subject matter is difficult for me. If this writing seems exhaustive in it's thoroughness that is due to not having communicating with some of the recipients in a long time, in some cases decades.
"Hi everyone, how are you? I'm so glad you're having a great time in Corsica! Please tell me details :) I told Sabine a bit of what my highlights were and what I always looked forward to, the sights the activities, lazy strolling and exploring, what the villagers are like, the smells the tastes and the feel! It's mystic. In my next letter I will detail these, some of which I trust you got to experience!
Well here's an update from me, please feel free to skip the parts you may find either redundant to your knowledge or otherwise dull. For a primer, I've suffered CFS (Chronic Fatigue Syndrome) for 13 years
I wish I had gone on the trip, however, even with Kratom I would have had a tough time there, neverminding the jetlag! Soon after Sabine left I had a flare up that lasted a few days which was awful, I was feverish and achy and it felt like a bad flu. It affects me not just physically but mentally as well, and after many years, spiritually. Then after the flare up I had a productive day, but likely pushed myself too much to make up for the lost days and all the messiness pilling up so then I had PEM (post exertional malaise, a fundamental facet of the CFS experience) and slept all day and night for two days. So mostly I've been sleeping. Most days I take Stevie out for a walk, then often that's about it. Of course we're all hoping on the therapy with Dr Chan. By the way, I hear good things about an acupuncturist in Petaluma as well, perhaps with Dr Chans' approval I will book an appointment there to supplement my therapy. Then of course there are Patricia's recommendations of Jorgen Sacha, as well as an intense therapy (requiring a month in the jungle) which I've asked her to please share the details about with you.
I'm so glad I got to have that week with Sabine and Sofia to talk and play and take them around! Sabine, I will order those cd's you wanted, I'm running by Flo first the ones she doesn't mind giving away before ordering the rest. Here are pictures from the visit
Daddy told me about wildfires in BC and supposedly they came to the edge of Jessie's town, I texted Jessie for an update on that, and thankfully the ones close to her town have been contained. It's a terrible thing what's going on there, and my thoughts go to Canada and all the forests.
In regards to CFS, every time I have a flare up I wonder what triggered it and look for commonalities to ascertain initiating vectors. As mentioned, these events are always traumatizing and it takes me a few days afterwards to emotionally recover. Jessie texted a therapy called Cereset www.cereset.com that may help in that department. I will add it to the long list of things to try as per my cfshelp.info personal page https://cfshelp.info/personal-plan.html (though the site could use some updating).
I recall when I was about fourteen in Corsica around the month of August when the weather became heavy, I had been asked to lacquer the windows but I simply couldn't get out of bed for two days. Years later while attending UCSC around September, I had a similar experience where twice I spent around two weeks in bed. Perhaps these were early experiences of battling EBV over proliferation, a of things to come.
During the most recent flare up, the weather also has been heavy, as if it were on the verge of raining but not. I've heard that Acupuncturists do needling to prepare clients during changes of seasons, so perhaps this is a factor (five weeks ago when writing this it was changing seasons). Certainly I've been battling EBV (Epstein Barr Virus) a long time, and perhaps those with CFS are more sensitive to it (any infections seem to shut us down to sleep and heal as an evolutionary mechanism run rampant). Also, the day before I cleaned a shopvac full of sludge, I tried to be careful but some got on me, so I quickly changed clothes and showered, however later that night I felt pressure around my eye as if fighting an infection, Also I had been accidentally scratched by Stevie, and furthermore I pushed myself to get the house clean before our trip back to Elk Grove. Perhaps more importantly a jar of almond butter had been open unrefrigerated for months but it seemed fine and I had some, and as mentioned, those of us with CFS appear to be sensitive to these things,
These seem to be the recurring factors (cat scratches, heavy weather, exposure to allergens, foods that are off, etc.), and while some are avoidable, the weather isn't. Of course I would like to address this overall sensitivity. Granular Anuloma appearances, persistent fungal infection on my chest I've had since age thirteen, persistent athletes foot and finding solid and stringy phlegm upon waking are all indicative of infections. Fortunately Dr Chan is slowly incorporating anti infectious agents.
When my CFS illness began thirteen years ago, it had been intolerable (in the early years I was turning a literal shade of green and losing weight, finding myself unable even to walk across the room, etc), then I stopped taking Cymbalta and that helped immensely, it was my first 'break'. I then extracted myself from a relationship that was a near constant source of stress and that was another 'win'. I found and used Xifaxan which helped with the IBS which in turn made the CFS more bearable (strangely the two are connected, you can't have an official CFS diagnosis without exhibiting IBS as well). Things were still extremely difficult, but over time I learned a bit about managing CFS, such as that with exertion or exercise I would experience PEM (Post Exertional Malaise), so I became conditioned to avoiding both. Between Cymbalta and Venlafaxine I booked an appointment with my psychiatrist who wouldn't see me for a month and not being on medication for that month was extremely difficult, I was in a state of waking nightmares every day. It turns out mental or emotional stress are also huge CFS triggers. My third biggest break came when I found Kratom.
After said improvements, I got Covid then 'long covid' on top, and it turns out the effects and actions of 'long covid' are exactly like cfs (astrocyte build up, breakdown of the blood brain barrier, serotonin storm, disruption of neuronal stemcells) so flareups have been more frequent and severe, for instance, around seven months ago I spent two weeks straight on the couch only getting up to stumble dizzily to the bathroom, it was awwwfuuul
For those interested I have written a list of other possible vectors, physical emotional, spiritual, environmental that likely play(ed) a part in either initiating or exacerbating CFS. Seeing as it's currently written in my shorthand, I will type it up upon request (it's about 30 items long). On a side note, are coffee and cigarettes vectors? Those with CFS don't process acetylcholine correctly leading to a Nicotine deficit which all the receptors throughout our bodies crave, this is the only reason I have cigarettes and would gladly quit and coffee.
Unless you experience CFS you will have no idea how soul crushing CFS is, it's not just a lack of pep, you are drained of all energy as if drained of blood. Qi or Chi is the fundamental Life Force and without it, (as with CFS) you feel awful like a zombie and the opposite of Life, I wouldn't wish the experience on my worst enemy. Feel when walk as if 50lb weights hang on limbs, chest and inside the head. As bad as my case is there are examples (such as the notorious case of the Doctor's son, a poor guy whom can only write symbols on the bedspread). I'm doing this push for recovery this research and letter for them as for my own redemption. I feel as if part of me is missing and I seek to recover, I look to and sometimes feel a larger Nature Spirit, I consider myself a Nature Spirit Animist like Druids of yore, (I'm not sure there's many of us in the modern 'civilized West'. There is a great imbalance in this world 30 millions strong shut in with CFS (not counting 'long covid' patients) that are unheard and require justice (that number is twice as numerous if including those with Fibromyalgia, a closely related illness). If and when I am successful in beating CFS, consider saving this letter as it will count as a 'Rocky Balboa' story (the boxer in the film 'Rocky'), and to me the ultimate Rocky story.
*This part those not in my immediate family may want to skip, until the **mark.
A sticky hatch is that everyone wants me to stop Kratom. I honestly don't see why, out of all the supplements and medicines which I've tried over the years it's the only thing that helps (well Maritime Bark extract helps a little, as does focus factor, Sativa marijuana though with awful side effects and occasionally Armodafinil). Kratom is the only thing that gives me energy, helps me focus and dampens OCD (even better than the Venlafaxine which I'm taking). However, for the morale of the group I will stop, perhaps in a week on Thursday (I'm just waiting to experience two to three days in a row where I feel relatively ok to have the mental fortitude to take that on). Dr Chan, reviewed tests which evaluated my digestion and in finding no glaring issues concluded that it is the Kratom causing IBS, and while Kratom use does lead to constipation, I question this assessment as I've suffered IBS long before CFS as well as before during and after Kratom use. The other advantage to quitting Kratom besides constipation is I'm then eligible for Jorgen Sacha and another month long more in depth therapy performed in the jungle.
When I have a 'flare up' it doesn't matter if I take Kratom or not, it has no noticeable effects. Also if I have overexerted and experience PEM it also won't do a dent, but on regular days it is extremely helpful, I don't know when I will have a flare up or why, and I seem to have them about the same amount as before I took Kratom. There are therapies that if taken before physical exertion theoretically prevent PEM (on the 'PEM busters' page) which I'm interested in trying. Last week I knew I would have a flare up when I saw the Granula Anuloma (a type of rash) appear, I don't think it was from Kratom. Three weeks ago when I attempted to stop Kratom use outright, I made it almost halfway through day two and had decided to sleep off the rest of the day to day three when I came home to find sewage had spilled up out of the bathtub and toilet out into the hall and my room. I couldn't let it sit there, so like Popeye with Spinach took Kratom and cleaned for eight hours. I'm hoping to replace Kratom with a different medicine (perhaps an Opioid receptor agonist, or medicine capable of increasing the amount of blood flow to the brain as Kratom does considering CFS patients lack blood volume and blood flow) yet so far what I've tried hasn't worked. If told I wouldn't have CFS if I give up Kratom, I certainly would, it is only to counter CFS that I put it to use. That said, I do not mean to cause a fuss and concern family by my dependence on it, which is why I've set a quit date. I only ask that if symptoms don't improve and no new medicines or therapies help that after a year I be allowed to take it up again.
**
It isn't that medicines and therapies aren't there, it's that only clinics will see you, as regular doctors have nothing to say or suggest, so the patient has to research on their own (without having medical knowledge and tired with CFS to boot). Three previous unsuccessful attempts at care took place ten years ago with Marina Del Boccio then her mentor Lawrence Fines and finally the Holtorf clinic where after paying for each with several months of therapy (each super expensive and ineffective) I ran out money
Thanks to the efforts of Florence, I'm now enrolled in a program of Cranial Sacral therapy, a helpful Reiki type healing touch and balancing, complete with prescribed visualizations I do at home, mixed with a bit of counseling during sessions, and look forward to a longer term relief via the proficient care of Dr Chan, the practitioner and her clinic, via a new regimen of antiviral treatments such as higher dose IV of vitamin C, and therapies such as HBOT, brainscans, Ozone perhaps hemotherapy etc. In the meantime I've been incorporating some new prescribed supplements and medicines, including some which I've avoided because I had either experienced strong reactions to them, or they require being taken with food (which I generally avoid because I'm always tired immediately after eating). Also, if I'm not careful the pills and supplements have me feeling nauseous which would also ruin my day.
I've been focusing on these therapies full time and there's much homework still to be done. On top of the tests I've completed, there remain two more home test kits to complete. I've largely been waiting to perform the tests after a baseline of feeling ok for two or three days in a row (in terms of regular sleep and eating) to record an accurate representation. There remains to ordering superfruit, completing another labdraw, an online test, requesting notes on a scan taken previously, perhaps a biome check and perhaps fecal transplant, figuring out which pharmacy to send Itraconazole (I requested the prescription to be sent to CVS but they didn't receive it, I'm not sure if Kaiser accepts outside prescriptions and I couldn't ask the clinic as it is closed Friday, etc), snore surgery or implementing an anti apnea device, booking a local acupuncturist, meditative paid sessions in an EMF proof crystal 'castle' in Larkspur and eventually when feel up to it local Chikung group, hormone therapy, chelation, detox, FIRS (Far infrared sauna), parasite cleanse, as well as other supplementation and medicines to try (for instance there's a supplement 'andrographis' that appears to have CURED several CFS sufferers. I have and would take it, though I'm afraid of the typical initial reaction). I'm also interested in Nimodipine, Cerebrolysin, Donepezil, Amantadine, Memantine and other nootropics. Details on these can be found on the 'Supplements and Nutrition' page https://cfshelp.info/8-supplements-and-nutrition.html, 'Personal Plan' page https://cfshelp.info/personal-plan.html, and 'Other Medicines' https://cfshelp.info/33-other-medicines.html pages on the site I've built
For some much of this letter is familiar or repetitive to what you have heard, observed or already know. For many whom I haven't communicated with for years, this is all new information, which is why I've kept the writing complete and detailed, (again feel free to skip parts, or alternatively request that I detail items, I am glad to have opportunity to fill you in). I don't consider myself a complainer by default, rather considering the length and magnitude of this ordeal I would say that mostly I've kept a stiff upper lip. That to say I wish for better circumstances and look forward to an era clear of this so that I may reconnect with you in happy ways (I miss dancing the most!).
During all this Patricia my fiancé, has been a dream, she is so understanding and supportive. I can't wait until we all get a home, uniting our cats and Stevie together, alpacas, nice country setting vibe friendly neighbors with Samantha learning to ride horses. Mark continues improving his production skills and has regular commissions for independent video games, not sure if he would like to work for a larger studio. Samantha almost at college, plays bass a lot has become proficient, not sure which direction studies and interests she'll take. Both have become close, good at shopping cooking money management and every year much more adept and helpful around the house etc. Look forward Sabine meeting them. Patricia made new connections to change laws and policies in Peru and to install programs for children with special needs.. Over four years in our household together, if any doubts we're very serious, if asked to marry I wouldn't hesitate. Her art is greatly improving and with Jorgen Sacha is pain free and has enough energy now to move into selling at booths and eventually galleries and who knows, Golden lady :)
Getting Stevie has been a huge blessing, so many great things to say including that snuggling with him removes my decades long string of nightmares. He is so patient with me and doesn't pester on days or evenings which I'm unable to take him out. Luckily dogs sleep a lot! He makes people smile wherever he goes, making me not exactly social but almost. There's a lot to learn from a dog with their touching inherent eagerness and how they are spirited loyal joyful faithful unjudging unconditional innocent pure true patient and earnest. simple yet extraordinarily fantastic pleasures surrounded cats and dogs intimate communications whispers of love presentation of unqualified support via universal lexicon.
The long distance healer was helpful in clearing negative influences offering me a clean slate to work on, also have fortunately been cleared of bad synchronicities which I was experiencing almost daily. Combined with clearings I enacted on my own as well as free and paid witchy clearings.
There's a new medicine that helps IBS called Isbrela which I've requested and I have also requested a referral for an appointment with a GI specialist (though their office isn't seeing patients until October). I've asked my general practitioner if I could perhaps jump the line by considering prescribing it to me sooner, as I'm very tired of dealing with IBS. I retook Xifaxan recently which helped, and I've switched to a regimen close to the FODMAP guide, I've even taken probiotics of many brands and kinds, taken fiber, but nothing seems to prevent IBS, and the journey between now and October seems like many difficult IBS experiences away. The IBS experience itself can be quite distressing, IBS in itself is excruciating, sometimes I've found myself crying on the bathroom floor then passing out in a sizable amount of blood. Often the pain sidelines me for the day, and in extreme circumstances I run 20 times a day to the restroom, finding only a fifth of the visits productive. Before Xiprexa I was remiss to leave home in case I needed to run to the restroom and when I did venture out I would chart out beforehand the publicly available restrooms along my route, quite a limitation and chore!
Other medicines besides Isbrela on the near term radar to consider are in the Psychiatric arena. For instance, for generalized anxiety I like Lorazepam but it knocks me out, (and long term use may lead to dementia!). My current psychiatrist is inept and my Venlafaxine barely works for my OCD, recently I spent half an hour with his nurse practitioner going over many observations, issues and ideas and things to try and she asked many questions, she said she would pass it along to the doctor, but when he replied it was only half a sentence long. The psychologist I was assigned to is equally terrible, he would hear me for an hour then in an accusatory tone bordering on anger, zero in on a small detail that had little relevance to the overall conversation. Twice I have had counselors whom I've had good rapport with but in both instances they moved away. I welcome any relief in regards to the OCD, for if it weren't for invasive thoughts (a hallmark of OCD) I wouldn't think at all, my only escape had been Martial Arts and dreams, but nightmares until recently interfered and PEM prevents access to Martial Arts. I used to rely on Karate to balance myself out, but because of PEM couldn't, so then I thought perhaps Taichi, but after a class had PEM for a week and a half.
Some of the issues I brought up with the psychiatrist include the question, of whether I have Bipolar disorder or Cyclothymia (which could be called 'Bipolar Lite') for which I have tried the over the counter type Lithium but it made me very tired). When I saw I could not bring Kratom into the country for my trip I asked with trepidation about stimulants such as Vyvanse, but was only told to stop Kratom. Vyvanse has helped many CFS sufferers as reviews can be seen here https://www.cfshelp.info/15-allopathic-medicines.html (though I am remiss in taking stimulants, I hate how they feel). I recently switched my Kaiser location (and doctor team) and had a phone appointment with a new Kaiser psychiatrist who has prescribed a higher dose of Venlafaxine, and eventually will try Memantine which has had success with her colleague's OCD patients (and is something I've been interested in to address the head injury). Also interested in microdosing Psilocybin to help mentally but as if not more importantly boost energy levels as CFS therapy
Results of head injury leads to personality changes. Howard Hughes (many injuries from crashed test planes led to his OCD) and the singer of INXS (a head injury sustained after a fight led to his severe depression) are two sad examples, for me it was the development of OCD that became incrementally worse. For what OCD is like, please refer to my journal http://cfshelp.info/faq. In short, OCD is like a panic attack that, for me has lasted thirty years, it's the first thing I think when waking and continues like a radio station until I go to sleep. It feels like I'm in a war with bombs going off, yet no one knows. Relief in the form of Ketamine, rTMS sessions, the monthlong venture in the jungle or psilocybin microdosing therapies are very much welcome, as are the non medication mediated states of 'Enthia' (a state of general 'breakthrough' wellness), solving two of three koans (and breaking the cycle of fear), calm expeditions by the river, etc. In my system of Martial Arts there are three Koans wherein solving each brings you progressively closer towards Enlightenment. I have solved the second of the three, which has given me great peace and multiple philosophical armaments in fighting against my OCD, I seek to solve the other two. There is a man who has solved all three whom I met a long time ago whom I have been searching for and, as of yet haven't found. He was an ordinary fella until he enrolled in a certain school of hypnotism after which he solved the Koans, and he gave me clues as to the thoughts involved in solving them, then demonstrated Reiki abilities he learned at the school (which astounded me as well as my friend sitting at my table at the time who witnessed the demonstration ). I'm not sure if without balance, energized, peaceful and clear mind if can solve the Koans, it may be required that CFS be addressed first.
Ketamine is a psychotropic medicine I pursued as therapy in a debacle involving a Berkeley Doctor who legally stole our money for the two sessions he accepted, wherein, after pouring my heart out to him casually declared that he wouldn't work with me (though Ketamine therapy was clearly listed on his site). I am still interested as with OCD I've been in a near constant state of fear for decades. I often have to retrace my steps, even in writing must I push through. Fortunately I don't have the daily nightmares as I had endured for decades as well (and 70% of the nights having nightsweats and night terrors where I was fully engulfed in a nightmare with all senses active and waking up screaming and shaken, such that sleep wasn't restful), but I still fight a lot in my dreams, often kicking and punching before being asked to stop by waking me up. After my head injury my OCD has become progressively worse every year. I employ radical philosophical thinking to counter the internal torrent of despair, as since my head injury my perceptions and psychology are always hyperintellectual, instead of a common way of being that 'goes with the flow' (likely brain plasticity is connecting regions out of normal order to cover for the damaged regions, see faq writeup http://cfshelp.info/faq). I can hardly imagine what it's like without severe ocd anxiety and it's hard to believe some people think and live clearly, it's my default state, and there are not enough comedies and happy media to help alleviate my perspective. I used to balance to feel whole and clear (even transcendental) while practicing Martial Arts, but as stated now with even easy walks I feel slow, so slow and so weak. Another non pharmaceutical approach to OCD is rTMS therapy https://cfshelp.info/70-transcranial-stimulation.html, a more complete list of possibilities can be viewed on site https://www.cfshelp.info/personal-plan.html
In April I did an intake with a Kaiser Psychiatry Doctor in Petaluma who was to send a list of 'outside referral' psychological therapists, which the office hasn't, so hopefully the new doctor has. On another psychological side note, more and more I'm forgetting things, often big things, so I have been taking pictures and journaling, though it's somewhat disorganized (spread over various hard drive and folder locations). I look forward to results of brainscans as this could be indicative of secondary damage from the head injury such as overall loss of grey matter, another common effect or indicator of Chronic Fatigue Syndrome.
What been doing recently:
People do a thousands of things in a day, I do one or two things a week, unless it's a good week, then (with Kratom) I may do up to 30 things that week (washing dishes counts as between one to five things, depending on my level of exhaustion, as does laundry), and shaving counts as one thing, vacuuming, writing a letter, reading, etc). I often feel overwhelmed by the things pilled up after having been sleeping for several days.
It's a daily struggle. There are pockets of joy here and there
Fortunately I have Tiburon and Stevie walks, occasional Elk Grove lake outings where Patricia and I take photos to share, or the sights and sounds of Tiburon's lovely stillness and birds, (I've included a picture) and always when in my room with Bossa Nova Jazz playing in the background, examples include the links https://www.youtube.com/watch?v=MTHwn9RbDPc and https://www.youtube.com/watch?v=--HgIBjSYWY etc.
When in Elk Grove I go shopping, take Patricia and sometimes the kids to appointments, Love and carefully, expertly massage the cats, each moment with them precious in it's own way, I read articles (gathering material for a series of books. Hopefully this is not a case of oblovism as I've been working for a very long time on a series (with the working title of) 'Western Consciousness'. Though as I grow older I understand that I must be more selective of my focus. Either that, or endeavor on projects at a less grandiiose scale. Certainly I feel that if I were to select the path of an author I would have to tone down my ambitions, as I couldn't possibly cover the topic as thoroughly as I have originally intended, certainly not at these energy and focus levels. Fortunately though I can refer to multiple examples of luminaries such as Immanuel Kant who did not, until the age of seventy commit to writing for the public, presenting his first and seminal work 'Groundwork for the Metaphysics of Morals' that at it's presentation immediately turned the field and understanding of Philosophy on it's head
Over the years I built the sites http://cfshelp.info (in building cfshelp.info I sincerely thought I would figure out the cause and therapies for CFS, and I do at times feel as if getting close to the answers and solutions, that's ultimately what I'm trying to do. When I found out there had been little research funding I pushed further thinking that perhaps there are relatively simple answer that have been overlooked, (for if want to do something right, do it yourself. That, and when the going gets tough the Landaus research)
I also built the http://retrobot.us and http://VisuAlchemy.gallery sites (where I had some hiccups redesigning, redoing the pricesheet, editing photos with new tools and now cropping images, and am also sorting the best photos, and will add some more recent). Working for awhile at a regular job one day a week (then enduring PEM the rest of the week) I at least I got to socialize once a week. I held gallery shows and display at a design studio, even selling some pieces. I entered two art contests (where in the second event my entry won first place!). I encourage you to view the redesigned http://VisuAlchemy.gallery website :)
It took a long time downloading every Marvel and DC comic books up to 2020 (and some independent and European publishers as well). If that interests you, let me know and I will transfer them to a 7tb drive :)
I'm almost done downloading and sorting TV shows and films for Maman on device that plugs into tv and easy to navigate genres and such, pick up where left off etc. I have hundreds and hundreds of complete titles, a list of shows is included which contains a mix of interesting titles and those downloaded, and if you have suggestions let me know.
A lot time has been either cleaning, taking care of the houses the best I can or watching tv, to the point I've become a tv expert, as it's difficult to focus, otherwise I would be reading non fiction voraciously. I would like to help find proper meds and therapies for Maman's issues of apathy, energy and tremors (I found a device though she didn't picture herself wearing it). If and when CFS is overcome I will like a newer camera, do photoshoots, clean and build robots and design my own, transfer tapes and notes, write articles and books, do paintings, promote my art, write comic books, travel (in state, Oregon, the Maldives, Arcata etc), socialize, restart the comedy troupe, engage in martial arts (I watch clips of Martial Arts training, and though ever fascinated I ultimately find it discouraging seeing that I can't perform. Previous to CFS I even assistant taught and sometimes outright taught Karate class). As part of my therapy I've been encouraged to do Chigung (an art similar to Taichi) though the most recent time I did Taichi I had PEM for two weeks. I seriously consider attending medical school to become a Doctor in order to help others suffering silently. As stated I have very little interaction, I don't make plans as I don't know if I can attend what I set, and have little focus towards career and business (whatever focus I eek out I put towards the three sites linked, the building I was often able to push through with little focus on 'automatic mode'), though when I do go out I present my best and you wouldn't know it.
A huge regret, probably the worst of all this is that it has kept me from Sabine with little money to visit, and with my phone issues I've been distant. I haven't been able to raise money to see her. I looked into emigrating to Canada to be close but Canada has changed it's policies to be very difficult (you now have to prove you have an employable skill not found in the city you ask to move to and prove this by setting up a working business for 6months, something I'm unable to do).
My type of humor works of the situation the audience in the moment, being on the phone is difficult for me as I don't feel like I'm there, to work off the moment the situation, it feels stilted. Further I get emotional wishing I was there on the other end, leaving me feeling like I want to see her and overall it's difficult for me, and when I'm not well I don't want to feel emotionally wishing or sad, partly as emotionality leads to CFS flareups or prolongs my PEM.
I had promises of four visits a year with her traveling down to the US, but in practice she visited sometimes once a year sometimes once every 3 or 4 years. Up to the age of 4 and a half I was very close to her, I pushed through the madness I was experiencing at the time (my OCD was very strong at the time) the best I could to show, relate, care and teach her best. All in all, even with the best intentions I wound up as an absent father
I may be in bed and asleep mostly but my mind is still extremely active and I come up with many good ideas for shows, books, philosophy, geopolitical rule, etc (recently I thought of 'ruling zones', of 'empathy conditioning machines', and of 'research pods' in International waters, please request description if interested)
Four years ago I was painting and took it up again recently, though I've been having a slow start, I wrote an homage to my Father due to being super appreciative and wanting the world to know what an amazing man he is, which having sent the first of three installments found very well received, the other two parts are in advanced draft, please see 'tribute' attached to email
Every one to three days I go to the market, when I can, I put together robots, or read voraciously,
I was thrilled to go to a Bocce social with Daddy where we both played well! Here is the picture, and later to a thrilling Baseball match (I reviewed the films I took which don't convey the thrill of the event well enough so I haven't included them).
Bocce Ball
I've been having the opportunity to catch up with Daddy and have casual chats and discovered some fascinating things, for instance I had forgotten that when he arrived to Europe he had misplaced his cashier's check and until he got a job there, had to get by with cunning, he's been taking dancing lessons, such as attending 'Five Rhythms' events I didn't know, he prepared an amazing goute', he told me about dancing in the 40's 50s and 60's, he saw a lot of the big rock and roll bands perform such as Chuck Barry, etc and while in Europe was exposed mostly to French and Dutch French music so he missed a lot of the big US and UK 60's and 70's bands, and noted how dance styles changed from touch couples to individual dancing individually or as a couple. Also I relearned how Mami and Papi were good dancers and went frequently,
I sent music links to Sabine (as attached to email, it represents hundreds if not thousands of hours of finding, selecting and compiling tracks so please do have an enjoyable listen). We're all looking forward to seeing where her studies and career path(s) take her. Currently she is studying Art Therapy :) and we look forward to her next visit!
As the 'TPTB' made civic moves which coincided with covid I was following closely for signs of the next moves, and as looting came closer I sought means to protect my immediate adopted family, while tallied events for my books.
Small moments are what I have, fortunately I enjoy them immensely, such as recently I took a sandwich to a nice spot, with Summer vibes and smells
Chirpy spot where had a sandwich and enjoyed the birds and sights of Tiburon :)
https://visualchemy.gallery/email/5.mp4 little clip of the moment
Well, you're halfway through the letter, I encourage you to continue, perhaps it's good to know what your comrade(s) are going through. Perhaps if your life seems less than perfect you can feel better looking at simpler criterion, such as knowing you can both get dressed and do your laundry for instance. Perhaps you enjoy taking a peak into someone's private life and thoughts
What it's like:
There's the question of how I feel, physically, emotionally, spiritually. This part is not complete as I'm going to 'plow through' this portion rather quickly, as I would very much like to get this email out. If parts are unclear please just ask for clarification, thanks :) Much on this topic has already been written at http://cfshelp.info/faq
First off, I want to acknowledge that it is difficult to see me this way day in and day out over years, I apologize. Second it's confusing when on good days it seems like everything's normal and I interact regularly (charming, joyful etc) as if hadn't just been experiencing crisis etc, then switch back inexplicably the next day, like jeckle and hyde. Third, as I've explained before when I'm low energy I am unable to fight OCD and become extremely sensitive, and you have to walk on eggshells around me, I know this is trying. I'm doing what I can to address both my physical condition and just as importantly the mental dimension to this. I again appreciate your patience and forgiveness for outbursts when I seek to protect the shreds of sanity I retain while presented with difficult words and conversation topics etc. When I am strong enough such visual or verbal triggers roll off like water on a duck's back, but until I may consistently display physical (and therefore mental) fortitude and strength I can be somewhat unpredictable. I do my best to keep whatever promises I make, even if it takes years to fulfill.
Everything I do is difficult considering my lack of energy, focus and brain fog and OCD, even small actions are a big deal. It's a lucky day when I accomplish one thing and I've come to resent that most people perform between a dozen to a hundred per day, (for instance it took more than a month to write this email and yes while it is long, I otherwise would have put it together within two to three days, four at most). Doing one phone call, or one load of laundry, sometimes that's my whole day (on a 'good' day that is) I feel ineffective, powerless and ultimately like I don't belong
I've learned who my friends are and that outside the recipients of this letter I don't have any. If social networking were present during college I may have more friends but in many cases do not recall the surname of friends had then. Very few have called, texted, emailed to see how I'm doing (three times over twelve years). Some are friends in intention but limited engagement has moved them to a category of acquaintances, and in all fairness some I fired when I deemed them as inappropriate (as they weren't true. Disqualifications include not responding to repeated invites to see each other outside party settings, lying cheating stealing, not showing any care or checking up on me, not lifting finger when imploring for a simple favor, having to listen and counsel on the phone for hours yet not changing behavior then calling about more of the same topics, repeatedly causing extraordinary messiness in my home etc), and Mrs Atchley (but I don't have her email). Even my Karate teacher was unsympathetic, insisting it was all in my head, that frustrating routine CFS patients used to get before biomarkers were found identifying CFS patients as having a legitimate syndrome. If ever I find true friends again I know I will hold them fast and in high regard. Partly the problem is I don't like speaking on the phone as I don't wish to explain what I've been experiencing, the simple lack of focus and energy to talk is exhausting, that and I prefer that they recall me the way I had been, or I prefer to communicate once I have something nice to say (such as very recently that I'm enrolled in a professional program of care). Furthermore I don't make plans to meet, so I'm not sure the point of speaking, that is I become frustrated when speaking on the phone wanting to see them knowing I likely can't and thus find the experience upsetting, so I avoid the calls altogether! I don't use social media as every time I open it something triggers my OCD which I have to then deal with for days. So my social outlets are severely limited.
My friendship difficulties are varied. Sometimes normal people kept their distance as they sensed I was different (I don't have Autism, yet seem to exhibit many similar behaviors, such as oversharing or not correctly reading social ques). Or if I did meet someone they felt I was overly eager which turned them away. Often I chose people who saw someone gullible they could manipulate which I only found out later when they revealed themselves by lying cheating or stealing. Friends met via partying were just that, party friends who didn't want a deep meaningful friendship just people to party with. Previous to CFS for awhile in Fairfax I ran with a group of awesome girls, but except Lisa they either moved away, lost interest when the group split or turned out too crazy even for me. I was for nearly 10 years on and off in a high intensity yet toxic relationship without a car far in the country with little money and she didn't approve of my friends or going out on own so only her friends were my friends and when I broke up she got the friends
I hardly go out, I certainly no longer join or attend groups or attend social events nor venture to locations where I would socialize and have the opportunity to meet and talk, etc, I don't talk on the phone or chat on computer, so I'm stuck watching tv as books require too much focus
I don't know I'm having a flare up until I'm well into it, as I keep hoping to shake off the light headedness and drowsiness until a day or two has proceeded (which is when I realize I'm experiencing a flare up and stop fighting it). Flareups then continue sometimes to three, or 7 days, and this is distressing in itself. When the flareup has completed I'm left processing the trauma for a couple days, not feeling like picking up items from my to do list, instead turning to pleasures to soothe.
Even on good days I often feel awful all day. Being ill has become a lifestyle. As mentioned, on good days I'm often processing the trauma of just having been in a flare up. Picture a bad flu, really picture how odd and awful you feel, with the inability to focus, work, socialize and having an awful mentality and outlook etc, imagine that for a year or more (as I often feel like crap on good days as well)
Yet some days are nice, today for example seems ok, so the trick is to get a few in a row so I can pick up where I left off in order to see tasks through
Understandably, I'm depressed and traumatized
I have been trained since nine to fight via Martial Arts, and this by far has been my greatest battle
I sleep so much that I have recurring dreams which include recurring locations and characters that even have character development (which reminds me of a myriad of scifi plays where astronauts stuck in cryopods wake in a computer dream interaction, for instance. There are many variations on this trope).
It's personally difficult for me to not produce very much, instead mostly just consume (arts and letters'), something I've always been philosophically against
Then there's the social isolation. It's amazing one person can endure so much for so long, and I feel I deserve a medal of valor
I Never pictured in my life it would be this way as I had so much promise and potential, and please excuse my egotism as I say that I did well in school, have various talents, original ideas and ways of thinking, and previously was a dynamic explorer, traveler and artist, in fact I was running an already successful comedy troupe when CFS struck. Good at directing 30 person cast, employees and comedy troupe, ought to be directing large groups or movements. In addition I've been somewhat a repository of Arcane knowledge, of occult historical geopolitical machinations with alternative historical assessments, as well as a capable analyst and interpreter of possible futures (as well as harboring a fertile mind for novel ideas in the scifi and fantasy arenas). With my encouraging and lush wide ranged exposure in rearing combined with earnest dedication to studies I grew up convinced I would someday be 'somebody', that is, do great things, having an impact, whether in wordily influence fame or fortune, or a sort of social political environmental impact, (perhaps replete with books or arts under my belt), or generative of a philosophical movement, the introduction of inventions (of which I have a huge list of ideas, some more developed than others) or an as yet undescribed impact of note, something. Perhaps by teaching or developing a school of thought, a luminary of sorts who employs obscure insight into political situations, revealing hidden details behind public events (this type of knowledge seems to find me an recent example is recently learning how companies fracking are allowed unmetered unbilled water usage and use far more than the populace, etc). That is I showed great promise. ok this portion was 'pleasantly selfish' just a bit, but this is the type of confidence instilled in me, it's how I was raised with encouragement and confidence from an early age both verbally and by example of those in my lessons, my family my school and my town.
A veritable wall of observations and ideas written in journals (in the basement) attests to this, we all generate many ideas, I take the time journaling and detailing both ideas and observations, often interrupting what I'm doing to extract and extrapolate the thoughts and meticulously jotting them down, somewhat akin to an explorer an alien or perhaps a spy reporting to home base.
The idea was and is to review and compile these observations and ideas, then amalgamate or follow through and employ the notions individually in literary and artistic endeavors. Taking such ideas seriously with the greater aim of selecting (or amalgamating) the best (or most feasible) entries that would push artistic and cultural boundaries.
I heard an interview with the author of 'Jonathan Strange & Mr. Norrell' (I recommend the tv show)and when asked why they haven't followed up with a second book in the series I thought to myself 'CFS' and sure enough they said they have CFS. It's a book in which Magick is common, and speaking of which there have been ten examples of magic I've witnessed or participated in,
Currently my self esteem is shot, I don't bother taking on any endeavors, and on top of that by the standards I've set for myself my physique is underdeveloped and overweight with embarrassing bellyfat, though I can't exercise it off as exercise leads to Post Exertional Malaise which knocks me out and feels awful, (like the worst hangover you can imagine, where while experiencing it nothing makes you feel peaceful or joy and you feel on edge from stimuli just like hangovers).
Sometimes I long to go to the Mt Shasta Zendo Monastary, perhaps become a monk, as I aim to solve the other two of three koans
I've learned that success is the only thing that matters in this world and if you don't have much of it people will literally have nothing to do with you. At this point outside of (occasionally) Jessica and immediate family it's been many years since I've received calls, emails, texts or letters inquiring as to where or how I am. Over these 13 years I've received 2 messages from Phil, 2 from Joan, one from Sth one from Lisa one from Larry one from cousin Bob, (so I've included your email to this letter). Not counting friends I've 'fired' for sending messages only because they wanted something from me (such as free massage therapy or otherwise a needy drain on time and focus, or otherwise inappropriate). On a more wholesome and less cynical tone, family is everything, and I advise readers to contribute to theirs and not to rock the boat
As mentioned, a huge regret is that I haven't been able to raise money to see Sabine. I looked into emigrating to Canada to be close but Canada has changed it's policies to be very difficult. I had a promise of four visits down a year but instead receive her once every year to four years. Up to her aged four and a half (when they left) I was very close, I pushed through madness the best I could to show, teach, entertain and Love the best. I inadvertently wound up as an absent father. Fortunately my family, and twice my former ladyfriend sent me (us) up to visit between once a year to two years. This of course before developing CFS when I could no longer travel.
I crave some sort of influence, via money, power, reputation, charisma, manipulation or secret advantages. When I sustained the head injury, I was looking for my helmet that morning which inexplicably had been stolen, and as an athlete with remarkable skateboard skills (to the point I was offered sponsorship), I pushed myself to go faster on a different path on which unknown to me had been construction around a curve, I came out of a coma of three days and awoke unable to smell or taste. I was told I wouldn't smell or taste again, though my taste came back and with the help of rose essential oils my father had procured for me I slowly regained that sense. I used to have a super olfactory sense, I could name the perfume a person across the street was wearing, in fact it was the primary manner in which I related mentally and emotionally to places and people (I knew what kind of attitude and disposition a person had by their scent, or what kind of environment I was, whether much stress or relaxation took place there, etc.). Olfaction is the most primal of sense mechanisms, and in fact those with anosmia (loss of smelling faculty), as seen in various psychological and sociological studies, can not hold a job! Further detached from the world in this way is part of why intellectualize environments actions and situations so much.
For over a year after the injury I retrained with drawing a lot, and then instead of healing finished up school, my girlfiend who used to enjoy fights didn't let up on this habit I could no longer participate in and not understanding my situation broke up with me, and I moved away then retrained with drawing a lot, instead of resting worked as hard as I could as it was a time when young entrepreneurs sold their companies for millions and I fritzed out, I compensated with drugs as self medicating.
Then had another business and also worked hard at that, but it reached it's maximum saturation (without a huge investment) and leveled off, if either business had succeeded I would have had money to use for influence, large projects etc. It's hard to be taken seriously without a Phd, success and money. I came close to money several times, building the Internet's first casino, following a newsletter that picked stocks correctly 36 times in a row (I sought and was unable to find investors), I invested play money in real altcoins and off $5,000 'earned' $332 million (again I sought investors as it was growing), I have come up with many inventions which I see are introduced every year, and recently again gained large profits with 'alt' coins but used the base and profits instead compounding and diversifying for bills, etc
I was feeling down as I often do, walking and thinking 'there's no pill for a shitty life', when I saw a hawk in sky and a monarch, and often as with moments like that, there's just enough to change your mind and keep trying, keep pushing. My psych can turn on a dime (cyclothemia?), when in a state can't picture how thought or feel otherwise, until I push through to joys
I am pleased with my primary care physician Dr Sinnott who has an impossible job on her hands, as she is open to trying medicines and therapies which I find. However I am limited in my research abilities, and when I do find an experimental medicine to try (typically 'off label' usage) I then back off and wait suspiciously only to invariably find it either has big side effects and or was ineffective.
Recently was another Bocce tournament and a concert Daddy won tickets to to which I couldn't attend, leading me to feel I'm watching life go by, as a prisoner for a crime I didn't commit
I feel bad for my previous partner before we had a CFS diagnosis, when the symptoms were simply inexplicable and the slow panic we went through, though I can't say they were overly supportive, nor withholding stressors and expectations which certainly didn't help. At one point I was overly paranoid about environmental toxins, both exacerbated and frantically searching for vectors rooting out and needling my surroundings like the man in the film 'the conversation'. Though it turned out not to be applicable, I did learn and write a lot from that. Without experts to turn to and no immediate answers I questioned and searched the gamut of possibilities. I'm perpetually analyzing in a Philosophical manner, and since I allow my mind free reign to consider possibilities, combined with what I've learned in reading arcane and occult texts, as well as what I have personally experienced, I am open to and have also considered 'leftfield' outliers.
Some notions reach the limits of believability such that it's easy to dismiss them as the fevered dreams of an attention seeker. However, if we treat all such stories in this way we might be missing out on understanding the true nature of reality and the hidden actions and creatures that dwell within it. So I took a look at some of those tales including vampiric Djinn infestations and shapeshifting reptilians. Then dove into the possibility of sentient etheric parasites called Archons, the low hum of dissatisfaction and malaise are said to be the ideally suited for Archons to feed (wherein they have great ability to manipulate spacetime and synchronicities to keep their food slightly to very dissatisfied within limited timespans of 5 to 15minutes). Sometimes I wonder if past lives are at play and CFS is karma I'm paying back.
As western medicine has thrown up it's hands and said the condition doesn't exist or admit they have no idea as to CFS, sometimes I consider (though not lean towards necessarily) that former Atlanteans that threaten the status quo are targeted etc, similarly I questioned other possibilities, such as sometimes wonder if Gd hates me, sometimes look to chemtrails as a connection there may be polymers, quantum dots, nanobots and heavy metals, or as yet unidentified and or genetically engineered viruses, EMF smog, I was by an Air Force Base when CFS began and when putting shades on we could see a thick haze, (when I climb out of this I would like to get a microscope and do my own research), sometimes wonder if past liveskarma paying back perhaps I had been a dark sorcerer or something, sometimes wonder if alien or milab interference, I know it's the standard line of the wacky, but patents to implant thoughts from a distance (my intusive OCD thoughts do not feel like my own) as well as experiments in remote induction of sleep, each entry would take a long time to unpack and explain and to show evidence etc. Before judging me, just realize how desperate a state I've been forced into.
I feel a need of redemption, a success story so can say yes I went through this but I yearn to proclaim 'this is what I did and what can learn from it'.
Know what it's like to be old already
I recognize that the overall tone of the letter comes across as negative, to which I would like to say that is not my true self or true nature (as evidenced by my cheery disposition all the way up until High School), and must state firstly that am overly thankful for my life friends family experiences previous to CFS, second I have and do keep pushing, remaining hopeful around therapies, and if I were not thankful for my life previous to CFS, I wouldn't be as super upset as I am now. However, after experiencing this for so long, I've gone stircrazy and perhaps even cynical (though I hope to be freed of this state of mind to which I have always remained allergic to).
What I've been up to these 15 years:
For those I haven't spoken with in a really long while, after college I started a web company with four full time employees at its height, moved out when ceo tried to molest me, got married had beautiful child whom I Love dearly (pictures of recent visit linked below), cofounded a reprographics business, attended and graduated music production school (and produced tracks, examples upon request), went crazy, got divorced, my daughter and business went to Canada (I was in a state hardly able to care for myself much less care for others or a business when OCD became intolerable I tried a long series of awful medicines), and all in between trained karate when I could, fell in love a few times each ending in tragedy, then met a lady I moved in with and painted a lot, upon her insistence I attended and graduated rehab and engaged in numerous 12 step programs, had a long toxic relationship with her, broke up got serious about photography started comedy troupe got hit by CFS and the rest is in this letter. In between I had five metaphysical (magick) experiences, wrote poetry and engaged in digital art,
More recently:
For a few years for work I performed Massage therapy at home and at an office (often rescheduling appointments to match my energy levels), I painted here and there, and also traded 'alt' bitcoins, I led Taichi class for awhile at two locations (I made sure to present myself well, then recuperated exhausted for a week).
I moved in with my fiance' and unofficially adopted her children and four cats, one of whom, Sylvester, is certainly my cat. Sylvester is my familiar, a Mage's companion, I know him now and will again as I have before. It's been the four 'years of the cats', I'm so thankful, when feeling miserable they come up and lay against me and purring it makes all the difference in the world. To support Mark, the budding musician, I took months downloading music software (if you want a hard drive with 7tb of music production software, let me know), and took Samantha the daughter, to a gun range, I also try support those in need with research writeups.
I arranged and downloaded mixes and was occasionally publicly DJing (up until 2010), I collected and compiled books of majick (a link to a thousand books available upon request), I completed a wall sized piece of digital art for a friend's daughter who was undergoing surgery (it took a careful year to produce), and as mentioned did research writeups, and assembled robots see photo below
my Robots see pictures at https://visualchemy.gallery/retrobot/hbot
I displayed at four art exhibitions, and entered two contests (where I took first place in the second contest), I display in an interior design studio wherein so far I sold a 4' by 3' piece
I read many non fiction books, three times as many regular articles and 20 times as many science articles (focused around the topic of CFS)
I have otherwise been staying up to speed on scientific developments
Thanks for all the patience and support, with a huge thanks to Florence for all the Love and support in finding and arranging therapeutic sessions. If you would like details on any line items please let me know. Interested in your thoughts and inputs and would like to know how your doing
So what can you do? Please consider sending words of encouragement to me or keep me in your thoughts, knowing that I wish I was there with you, and excusing me for my 'radio silence' and absence now that you understand my situation and intentions. As always I'm open to your guidance and insight, and perhaps if you are research inclined, have a look at cfshelp.info and if you know doctors, consider asking them to review the site seeing if something from their vantage hadn't otherwise been put together, noticed before. Or for those politically inclined who wish to get political, research into CFS is not funded (as no one knows the cause of it and because researchers can't then say if they have success in remedy of something unknown they are unable to receive more funding), and do realize those in your community need your help, as shut ins not as fortunate as I with a support network and likely could use a meal, a clean house or companion, and consider a political rally, as stated on my site "out of an abundance of caution, the NIH will not fund any ME/CFS treatment trials. It only wants to move on ME/CFS treatment trials after it believes it’s likely to get a good result. Trials have been chronic fatigue syndrome’s Achilles heel. Except for cognitive behavioral therapy CBT and graded exercise therapy (neither of which are helpful), which have dominated the clinical trials arena in ME/CFS to an astonishing amount, biological treatment trials have been few and far between. When they have occurred, they’ve been small and follow up even when they’ve had positive results – has been rare. Dr. Koroshetz has said he believes bad results could doom the field for years as NIH is remiss to test drugs for which the resultant mechanism of action in healing or addressing CFS will remain unknown. In other words, at best a drug can show a correlation to remission but can't be considered the cause, and that is not solid enough science to receive funding to pursue. For details on the disparity of funding please see links below where marked 'Get involved'.
On a happy note for the first time in 12 years I took a nap and woke feeling somewhat refreshed (a hallmark of CFS is that no matter how much sleep, you never feel refreshed and replenished). What have I done differently this time? Perhaps the Itraconazole and xifaxan, Taking Sacha Inchi protein, Pym pills (with Acetyl L Carnatine HCI, Tyrosine, L Taurinbe, L Theanine, L Glycine, Zinc Glycinate, Vit B6 Pyridoxine HCI, Vit b12 Nethylcobalamin). Perhaps it's the pills taking from clinic (ATP 360 capsule, Tri-fortify Glutathione gel, Pure Omega Ultra HP softgels, Active B-complex capsule, Tru Niagen® Pro 500, IVATP and IVATP2 and Injections of NAD and high dose Vit C). It may be that the two months taking econugenics Modified Citrus Pectin and ecoProbiotic had a delayed beneficial effect. I recalled that the Dalailama was weak and prescribed to occasionally eat a bit of meat, which against my principles I tried, and it seemed to clear my system,
I Stopped taking Lorazepam which was possibly a trigger, and avoiding triggers such as switching from wheat base to rice based (gluten free). Psychologically knowing I've been cleared, and employing guidance meditations (such as the parable of lifting stones) perhaps, it's been three days since I wrote this and strangely I feel somewhat ok for the first time in longer than I can recall."
Well, that's my letter. Please tell me what you've been up to, perhaps the reminiscing, reflective and assessment format will inspire you to reflect and share, and or we can try to make a phone appointment, knowing I may have to cancel. Thanks,
recent new works I haven't sorted through yet https://visualchemy.smugmug.com/Recentnewworks
Sabine, Sofia, Benjamin and Joshua
https://www.smugmug.com/app/organize/Visit
Sylvester and Stevie!
https://visualchemy.smugmug.com/SylvesterandStevie
Music
https://visualchemy.gallery/email/RelaxMusicl.mkv
https://visualchemy.gallery/email/RomanticMusic.mkv
https://visualchemy.gallery/email/CERTIFIEDJACKINMIXTAPE.mp3
https://visualchemy.gallery/email/Dither.mp3
tv links
Get involved
To understand the lack of NIH funding or testing, you can visit the following pages https://www.healthrising.org/blog/2020/07/24/open-letter-covid-19-long-hauler-me-cfs
https://www.healthrising.org/blog/2021/09/18/nih-mammoth-effort-understand-treat-long-covid
https://www.healthrising.org/blog/2021/10/19/mass-nih-funded-chronic-fatigue-research-centers
https://www.healthrising.org/blog/2022/01/08/report-from-the-nih-funded-me-cfs-research-centers-the-mass-webinar
https://www.healthrising.org/blog/2021/06/10/insights-chronic-fatigue-syndrone-long-covid5802
https://www.healthrising.org/blog/2022/01/24/2022-the-year-ahead-pt-i-the-long-covid-research-boom
Med links
https://cfshelp.info/53-testing-for-amount-and-kind-of-brain-cells-by-evaluating-r2t-signal-from-mri-scan.html
https://cfshelp.info/60-hbot2.html
Supplements and Nutrition
https://cfshelp.info/8-supplements-and-nutrition.html
Nootropics
https://cfshelp.info/9-nootropics.html
Personal Plan
https://cfshelp.info/personal-plan.html
OCD
https://cfshelp.info/68-ocd.html
Linkstest.pdf
https://cfshelp.info/linkstest.pdf
supplement.pdf
https://cfshelp.info/assets/supplement.pdf
Early and sustained improvement in fatigue-related quality of life following red blood cell transfusion in outpatients - PMC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7572478
Enhancing Blood Volume in Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia - Health Rising
https://www.healthrising.org/treating-chronic-fatigue-syndrome/enhancing-blood-volume-in-chronic-fatigue-syndrome-mecfs-and-fibromyalgia
I like the 'Hydration Multiplier' as with the case of many CFS patients, Perhaps there's a clue in there somewhere that I feel incredibly thirsty all the time, and it quenches that almost insatiable thirst
Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/threads/epstein-barr-virus-and-the-origin-of-myalgic-encephalomyelitis-or-chronic-fatigue-syndrome.6631/#post-38808
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