PHOENIX RISING

Jason was only 23 when he died. He’d had CFS for about 5 years and following a car accident Fibromyalgia for a year or so. Jason was an unusual person; bright, articulate, full of intellectual energy and enthusiasm.

Jason first posted to the CFSFMExperimental chat group in December of 2004. He didn’t post regularly until July but from then on the message board was filled with detailed, often quite technical posts. Who was this guy I wondered, as I tried, often vainly to keep up with his ideas. I was surprised to learn that not only was he quite young but that he managed to keep up his enthusiasm in the midst of what appeared to be a difficult home environment. Despite his tragic passing Jason's enthusiasm and creativity left me with a sense of hope and that is how I will remember him.

(Thanks to Sue Bailey for providing many of these)

People from around the world expressed their dismay and sense of loss at Jason’s passing. There are too many to provide them all but here are some short excerpts from a few of them.

Barbara from Canada expressed the thoughts of many of us when we first heard the news ‘I was absolutely shocked and stunned by the news of Jason's death…He was so full of hope and expectation"

Sylvic from France wrote "What a shock it has been to lose him... He was so young, and full of life despite our common illness. We will miss him a lot, we already miss him a lot."

Jan from Australia said "I feel deep deep sorrow at his death. His light shone so brightly. He has touched all of us with his enthusiasm, generosity of spirit and his dedicated research. I hope he had an inkling how much we valued and admired him."

Katrien from Belgium wrote "His sentences were full of hope and life. I will surely miss his presence. May he rest in peace"

Kathryn from Canada wrote "Jason, we never saw your face or heard your voice, but you were one of us. I will miss your writings on our group; the CFS monster has taken another precious soul from us. …You are silent now and at peace. Rest quietly, while we mourn."

Jo from the UK wrote "He had so much potential and it is tragic that he is no longer with us. I will miss him greatly, he will not be forgotten."

Rich from the San Francisco Bay area wrote "Jason was kind, intelligent, and highly motivated to find a cure for chronic fatigue syndrome. In spite of suffering from this fatiguing disorder himself, he was tireless in pursuing a cure. As a researcher, I found his ideas very stimulating, As a human being, I appreciated his great kindness to others, going out of his way to help them with their own particular issues, while he, himself, had his own ongoing struggle."

Lisa from London wrote "He was remarkably brave to carry out his work under such adverse circumstances and I admired his strength enormously Had Jason lived, with his talents, he would have gone far and achieved a great deal. It is a great loss."

Jason’s doctor from New York, Dr. Enlander wrote "I am devastated by Jason’s death… Jason was a kind, bright, enthusiastic young man. He will be missed by many friends and family. He was snatched from us in the prime of life."

Sheila from Scotland wrote ‘He touched many lives through the Internet... we have to fight on trying to work out what is causing this illness….just like Jason did."

Cort from San Diego wrote "Jason was our partner in fighting this disease and he was very fine partner indeed….the world is a little less bright without Jason in it. His death exposes both the moral and scientific hollowness of those who prefer to see this disease in psychological terms and underscores the tragedy that is CFS for hundreds of thousands of sufferers across the world."

Donna from North Carolina wrote "Jason was a beacon of light in the often times rather dark world of CFIDS…His enthusiasm was contagious, especially for us long term sufferers, and he will truly be missed"

A quote from Pam in England is perhaps the best way to end this tribute "He must not be allowed to die in vain, we will get to the bottom of this tragedy and doctors must get to hear about the effects of this devastating illness…It is up to us to inform, question and debate the horrors of CFS".

Nobody on the chat lists appears to have actually known Jason apart from his postings. We knew Jason (and know each other) through our words. There are no faces to put to these words, nothing physical at all really, and often not much of a story …. just the thoughts and ideas and strivings of people trying to come to terms with and conquer a difficult and mysterious illness.. Rereading some of the posts Jason contributed over the period of time he was with us is perhaps the best way to remember him.

Jason was unusually giving with information about all aspects of his life and it was a joy reading his posts. He was a prolific poster; in one four day period early in December, for instance, Jason posted 28 times to the CFSFMExperimental and CFSResearch groups. Between the Dec 12^th and the 15^th the day before he died Jason contributed 13 posts. A lot of people fed off his reports and they generated quite a bit of discussion. His detailed posts also give us an unusually concise overview of his treatment protocol during the last months of his life.

He had enormous fluctuations in his health in the last half of 2005 but had, surprisingly, made substantial progress overall. We pick up Jason’s trail in July. Not surprisingly he felt he was hot on the trail of something and it was good to hear that his health had recently improved dramatically...

JULY - On July 3^rd speaking of his ‘years of nonstop research’ he was excited to report that ‘after 3 days/nights with no sleeping’ that ‘EVERYTHING (CAME) TOGETHER nearly at once while (he was) just sort of unconscious, staring at the screen and not really thinking’. He was at a real high and requested help, both financial and intellectual to help him prove his theory.

None was forthcoming; in fact, no one replied on the list and he didn’t post for another two weeks but July was a good month for Jason. An inveterate experimenter Jason continually adjusted his treatment regimen and he’d recently hit on a good package; four things he was taking (low dose naltrexone (LDN) 4.5mg, nattokinase, maitake d-fraction, and B12/magnesium/glutathione injections) had brought him more energy, greatly increased libido, no constipation or diarrhea and much less pain. Most of it he felt was due to LDN.

By July 26^th things were looking up enough that he was able to report that ‘I have recovered 75% and continue to see benefits (and) was basically bedridden’.

His only really big problem was sleep and that problem was somewhat embarrassing. He reported. ‘My sleep is DEEPER when i get it. The problem is actually rather embarrsing……. Ill just say it bluntly : the reason i cant FALL sleep on liquid low dose naltrexon is because of constant noctural erections. They are constant and wake me up. My sex drive is also high with this and my orgasms are BEYOUND this EARTH. Just too much for me." What a problem!

AUGUST - At the end of August he reported that he continued to see benefits; his candida had apparently cleared up (no white tongue) and his temperature had risen about a degree and was now normal. He also appeared to be undergoing regular herxing – having a fever for a day or so every week or two and then feeling better. He said he felt "very ‘different’ after 3 months on naltrexone. He had also added a substantial number of supplements to his protocol; including mag sulphate, folic acid and b-12 injections, NAC, nattokinase, b-6, b-3, selenium, creatine, a protein supplement and increased salt intake.

The only real problem was a trip to the hospital from excessive vomiting and dehydration. The hospital diagnosed increased calcium and magnesium injections stopped the vomiting.

On August 28^th he reported that Dr. Enlander has prescribed 2400 mg. Neurontin for him and that it also was working really well: "Neurontin significantly helps many PWCFS including me, in fact it can make me feel almost normal. Good sleep. Energy, and no pain." And that "Neurontin is stimulating for me and just makes me feel centered and normal." He would echo these thoughts several times during the next month or so.

SEPTEMBER – Apparently not satisfied with his progress on September 1^st he reported he had embarked on the salt C protocol but it had left him nauseous and herxing at least at first.

On Sept 3^rd he noted that he didn’t respond to many antibiotics anymore because he’d ‘overused them so much’. He also noted that Zithromax had given him a seizure. On Sept 6^th he contributed another very long post. In a series of posts he reported how obsessive he was at learning about CFS, "I research 24/7 on every single resource on the net, people etc." and that sometimes he got so deep in his research that "I have gathered far too much information for my brain to handle.". This naturally lead him to be sometimes less than organized in his posts. ‘My replies will go way off topic because my mind is buzzing with CFS and related ideas.

One part of his need to communicate was his loneliness and Jason was upfront about how devastating CFS had been to his social life.

"One reason may be because I am very lonley. Like many of us, I lost all my friends, girlfriend (of 5 years) and my job and life. I am 22 and still fighting for disability. I live with my parents who don't support me and they are not very nice. I am college graduate but cant work, UNLESS from home….(any suggestions?)"

He did have one big asset, his doctor; "my doctor is wonderful (Dr.Enlander, i suggest anyone in NY or near to see Dr Enlander, he knows it all….. and is compassionate and will do almost anything to get your life in order the best he can."

Not surprisingly he didn’t feel his brain had been affected by CFS saying ‘my brain has not been effected by CFS (at all even! - in fact i feel very able to learn + understand and comunicate, though obviously when I am overstimulated. I can't stay on one subject."

Surprisingly given his volubility we learned that he was pretty shy, that "in social settings I am the shy one’ and had developed anxiety and agoraphobia and depression since his car accident. He was about to start another drug (desipramine) and was still happy with Neurontin considering it ‘one of the best main or co treatments for CFS and FM’. Sometimes he felt pretty good stating "I sometimes feel almst normal, if i get sleep, and with the LDN" and hoped his current protocol might "be the key for me and I hope some of you." Despite his problems he felt he might be on the right track.

On Sept 12^th he updated us on his full protocol which had continued to rapidly change. He had added xyrem for depression and sleep (and it had helped), mag sulphate injections, vinpocetine to increase blood flow and was going on an antidepressant, probably despiramine because depression had turned into a big problem "The depression this disease brings is just getting to me badly, I am agoraphobic etc... since Jan when my Fibro set in". He was excited starting the anti-elastase antibiotic cefobid recommended by De Meirleir and had stopped nystatin (no more yeast problems), methylselenocysteine (lots of selenium in other places), inositol, Salt/C (too much herxing but wanted to return to it), Samento, Zofran (not nauseous anymore), niacin, thiamine.

On Sept 16^th. During a discussion on isolation we found out what a difficult home environment Jason was caught in and how important researching and the internet were to him. He said quite poignantly

‘I am recently giving in to the antideprsssants i am just so depressed. i have no friends in my area, no job or vehicle anymore, nothing. i live with my parents who are not supportive mentally. So I sit in my room all day or in bed and research CFS/FM and related. I know a lot now about medicine and stuff because of years of reading about this stuff. Without the net, i do not know what i would do. I would be all alone."

In the last week of his life Jason seemed more lucid than ever. His July posts, while always informative were sometimes rather chaotic often containing incomplete sentences, grammatical errors and misspellings. By December he seemed much more relaxed, unless he was really excited, he wrote in complete sentences with few grammatical errors or misspellings. At least judging from his posts he seemed doing much better.