It all started with a post on a travel and credit card points forum from a non-regular user.
“Dr. Jay Goldstein passed away this afternoon in Fargo, ND,” it read. “Ideally, for the funeral scheduled for tomorrow, we would have his Jewish name and parents’ names, but when I spoke with him last week, he did not remember his parents’ Jewish names.”
The post listed a few details on the man’s family, ending off with a final plea. “Any leads on what their Jewish names are or where they are buried would be greatly appreciated.”
The request, posted on March 5, sparked an online genealogy hunt that ended with a total stranger visiting gravesites 1,399 miles away from the original author.
Who was Dr. Jay Goldstein? And who was trying to arrange his Jewish burial?
A Jew in North Dakota
Rabbi Yonah Grossman, Chabad rabbi in Fargo, North Dakota, is used to getting calls asking for him to preside over lifecycle events. So it wasn’t unusual when he was contacted by someone living in California whose family friend was nearing his final days at a hospice in Fargo. Could Rabbi Grossman go visit with him and prepare him for the end of life?
Grossman was happy to help. He drove over that night and visited with Dr. Jay Goldstein, a local Jew whom he had never met before.
“It was very hard for him to speak,” Grossman remembers. “Every word he said took so much effort, so we really didn’t talk much. I sat with him and recited the end-of-life prayers.”
He learned that Goldstein, 78, was a prominent family physician who had specialized in chronic fatigue syndrome and fibromyalgia. He taught at University of California and directed the Chronic Fatigue Syndrome Institutes of Anaheim Hills and Beverly Hills. He was one of the leading voices on the subject, authoring many books on it. He served as a Lt. Commander, stateside, during the Vietnam War.
Grossman also learned that Goldstein was a kind man, someone who had helped many people through his practice and even beyond, subsidizing treatments for those who couldn’t afford it. He had never gone to synagogue, and had kept a distance from anything religious.
The rabbi came back a couple of days later and cautiously asked Dr. Goldstein if he would like to lay tefillin. He indicated that he did.
“He became very emotional,” says Grossman. “I was so moved just watching him. And then he gathered strength and told me, ‘I didn’t think I’d ever get a chance to put on tefillin again.’
“It’s moments like these that keep me going during difficult times.”
Grossman, who had heard that Goldstein planned on cremation, raised the subject of having a kosher, Jewish burial. “I explained the importance of Jewish burial. He listened carefully and decided to change his plans.”
Two weeks later, Dr. Goldstein passed away.
The family reached out to Rabbi Grossman who arranged that his wish for a Jewish burial be honored.
But he was bothered by something that in the larger scheme seemed minor, but was nevertheless significant.
“Dr. Goldstein had told me his Jewish name is Yaakov. But he did not remember his parents’ Jewish names. It’s preferable to have the deceased’s full Jewish name and that of his or her parents for the ceremony and headstone. I wanted to do it right.”
When colleagues were unsuccessful in finding the information, he took a gamble and turned to an unlikely platform for help.
Jewish Internet, Do Your Thing
DansDeals.com is one of the most popular miles and points blogs. Opened by Dan Eleff in 2004, it’s helped millions of followers score deals. It also has a busy forum mostly focusing on advice on all things points, miles, and travel. Mostly–because just that week, anonymous members, Orthodox Jews, had helped connect a lost-and-found prayer book with its owner.
“I’m not a regular on the forum,” Grossman says. “But I saw the story of the siddur and figured, if these savvy guys could track down the owners of a siddur across the globe, maybe they could help me find two names–albeit very common ones.”
The post took off. Soon, about a dozen anonymous users were busy scouring the internet for clues leading to the location of the gravesites of Dr. Goldstein’s parents, which would undoubtedly bear their Jewish names.
They were cheered on by users like @JACKBLUE who wrote, “I’m following this thread….. I can’t help much but all I can say is wow!! What a [sic] beautiful family we have here!”
Birth, marriage, and death records were pulled up from internet searches and ancestry websites were consulted. The team of strangers tracked down names of family members of the deceased and their records. They found the synagogues the senior Goldsteins may have attended and obituaries of their relatives.
“Am I spe[n]ding too much time on this?” wrote one of the sleuths with the handle @good sam. “Yes.”
And yet the records show he kept on searching.
A Minyan of Jews and a Brother-In-Law
The gang soon narrowed it down to one specific cemetery in Philadelphia. But they didn’t stop there.
“I was floored when one of the users, @Something Fishy, said his brother-in-law living in the area offered to go to the cemetery the next morning to find the headstones himself,” says Grossman.
Said brother-in-law, Nachi Schechter, made the trip but was unsuccessful, even with the help of the caretaker. The cemetery was in disarray, with arbitrary and unmarked sections.
But it turns out that the lead was inaccurate. And when they did find the correct cemetery, Schechter offered to go to that one too.
The next update is short, and attached to it are clear photos of the markers of Saul (Shalom) and Rae (Raizel) Goldstein, parents of Jay (Yaakov) Goldstein: “Found them both!”
And just in time too, an hour before the funeral was set to begin.
The Ultimate Kindness
Furnished with the information, a grateful Rabbi Grossman led the small funeral of Dr. Goldstein in Fargo. It was a man he’d only just met, and for whom dozens of strangers, scattered across the US and possibly abroad, had come together to ensure a complete Jewish burial.
Doing acts of kindness for the deceased is considered one of the greatest mitzvahs a Jew could do. The Talmud calls it “chesed shel emes,” the ultimate kindness, as the favor can never be repaid by the beneficiary.
“It’s unbelievable,” says Grossman. “These people never met him and never will. They’re likely not rabbis. They have nothing to gain from this. He wasn’t part of their community. But he was our brother, and that’s what brothers do.”
Thanks to a group of Jews looking for travel deals, a Jewish man in North Dakota was laid to rest in a beautiful, fully Jewish ceremony.
May the soul of Yaakov ben Shalom v’Raizel be uplifted, and his family comforted among the mourners of Zion and Israel.
lila Stein
March 22, 2021
AMEN
Cheryl S.
January 2, 2024
Thank you
marjorie spofford
March 22, 2021
What a wonderfully uplifting story.
Garrett Keenan
March 22, 2021
I have read 4 of his seminal books on Chronic Fatigue Syndrome. He was an underappreciated genius who was a pioneer in advocating Ketamine for pain and depression remediation. His industry leading career was cut short by an auto accident and a malpractice liability suit. Unfortunately, no one has pursued his more than 10,000 CFS cures. He has been missed these past 10+ years due to NDA muzzeling.
GK
Gail L Coplin Goldstein
March 22, 2021
I am his widow. A kinder, more generous man would be hard to find. A scholar, healer, and family man who was both praised and vilified for his groundbreaking research in Chronic Fatigue Syndrome. I believed in him. There were political and social forces that impacted his later years, and much professional jealousy. So sad. I hope those who gave him no credit yet claimed his work as theirs and profited from it have done some good with it. I used to tease him that he was a Talmudic scholar in disguise, always studying and working for the benefit of mankind. Thank you for your kind sentiments.
Sharon Gates
March 22, 2021
I am so sorry for your loss. May he rest in peace and his memory be for a blessing.
Gail L Coplin Goldstein
March 23, 2021
Thank you for the comforting words. Bless you.
Byron Hyde MD in
March 23, 2021
Dear Gail, I loved your husband as a brother and one of the few in a handful of knowledgable people on M.E. who had actually examined and investigated patients. Most of the CDC and NIH experts have never any significant number of M.E” patients and many of the so called experts have never investigated even one patient. As you know, Jay had a difficult childhood, and had a long fight with his chronic illness since childhood.
But he was also one of the few, persons I have met who I could call a true genius. He was always diminished by the authorities and his real knowledge never listened to by the “experts” at the CDC and NIH who were not experts at all but poorly educated fools, that have unfortunately remained in power in the politics of medicine and never in the science of medicine.
Jay was a very good friend and we collaborated on several patients. He also introduced me to the amazing Dr. Ismael Mena in California which set me onto the study of SPECT brain imaging.
Then, added to his already difficult burdens, Jay had been hospitalized for many years with a degenerative brain disease and he is probably happy to have gone to his final rest. Fortunately he had a loving and caring wife. In this he was a lucky man.
Jay once got up at a major public meeting in a large San Francisco hotel, when we were together and told the CDC officials there, they were all total idiots.The CDC officials were stunned, but he also received a large clapping from the hundreds of others present. He was correct of course and I would have added Dangerous Idiots who have destroyed any significant advance on the M.E. spectrum of disease for over 30 years. The CDC has created a tragedy we didn’t have to add to the already sufficient difficulties with M.E.
When Jay stated that M.E. was a disease of the brain particularly affecting the central limbic system of the brain, he was correct of course. It is so obvious when you look at an M.E. patients brain SPECT. All M.E. patients have an injury to the anterior left temporal lobe and the posterior limbic system. The degree of injury usually expands through the brain consistent with the degree of disability.
If it wasn’t for the CDC, and Stephen Straus of the NIH, I fully believe we would have long since had an immunization to prevent the spread of M.E. as we have had an immunization against Polio that worked for most cases of Polio enteroviruses. Then we could have looked solely for a treatment to prevent or repair the encephalopathy injuries to the brain causing the terrible debilitating symptoms and physical and intellectual disabilities caused by the micro vasculitis behind the chronic encephalitic repercussions.
Jay Goldstein was a most wonderful and generous man. His only real luck was to have had a wonderful wife and son. He had suffered too much for too long.
Byron in Sicily
Gail L Coplin Goldstein
March 24, 2021
Byron, thank you for your kind words. I reminded him to the end how much he contributed to humankind and that others will someday understand his work and pick up where he left off. He loved and admired you. You lifted each other up in many ways, for it is a lonely path you, Jay, and other like-minded scientists and researchers walk to benefit others. Please send me your e-mail and phone number. We talked of you fondly. May your path be blessed.
Lynn
March 30, 2021
I am so sorry for your loss. Your husband gave the ME/CFIDS Community hope and amazing research. Gentle hugs, he will be remembered,
Byron Hyde MD
March 31, 2021
Gail, my email is bmshyde@gmail.com
I am 85 this year and am at the moment at our home in Sicily. Once again my sincere thanks for the existence of this brilliant physician and wonderful man, and his lovely wife. Byron in Sicily
Eileen Rayned
May 17, 2021
I graduated in1960, from Lower Merion, with Jay. I remember him well. I’m so sorry for your loss, but I’m grateful to have come upon this post. May Jay’s memory be a blessing for all those who knew and loved him.
Eileen Raynes
May 17, 2021
Gail, so many classmates want to be in touch with you. My email is below… please contact me so I can share with friends…. thank you,
Eileen
Gail L Coplin
December 28, 2021
I just saw your sweet comments. He was very entertaining when talking about his adventures at Lower Marion. You said you sent an email address but there is none. Mine is profrn2009@hotmail.com. We miss him and sometimes it feels as if he is in the room with us. Out of reach, out of sight, but always in our hearts.
Lyn Wessman
August 31, 2021
Gail and Son,
Please accept my most sincere condolences at the loss of your husband, and your son’s father. I, too, was a patient of Dr. Goldstein’s from WA State, saw him for days, three times during 2000 and 2002. My sister who lived in Laguna Beach sent me a magazine article about your husband and his work with CFS, and I knew I’d found my Dr. He gave me hope after years of being ill from the testing of Iodine 131 at Hanford, WA, and in 1962, at age 17, my father and I acquired a flu virus Type B that put both of us in a nightmare of illness and hopelessness. I’m now 76, have been searching for Dr. and your family for some time, and just recently found that you re-located to ND.
Needless to say, all of his patients are devastated at the loss of his genius, and his abilities that go far above and beyond any MD I’ve ever known. I’m still poo-poo’d by MD’s, told that the illness doesn’t exist, but because of your husband’s encouragement and treatment, I have been able to carry on, study more virology than I thought was ever possible, and continue to try to tell my MD’s the story about Dr. Goldstein and his treatments.
The world has lost a kind, generous, sympathetic and very knowledgeable man, and I want you to know that he was revered and helped by so many of his patients. I’ve come to understand the political and social aspects of scientists who take the ideas from the brilliant, and use them for self-aggrandizement. I’m happy that Dr. Goldstein didn’t need the approval of these people, and that he understood that his contribution to those so ill they can no longer work or live normal lives puts him far and above the people we both know don’t deserve accolades or acknowledgment, but it still irks me that they’ve tried to steal a legacy that is not theirs. I talk about Dr. to every MD I see, and how much time and caring he put into treating each and other patient. He said to me, “We’re not rich,” that of course isn’t true. He, you and your son have riches that money and notoriety can’t buy. True integrity, love, and devotion to his passion, and a family who’s always been supportive of him. In my eyes, he could do no wrong, and I do so appreciate finding this site to finally tell you how so many of his patients admired and cared about him. I’m happy his MD friend has found you, and will now be there for you in your time of grieving. I’m so sorry, words can’t express my feelings after finding out of your dear husband’s passing today, but knowing he’s at peace, is comforting to all. Lyn Wessman
Tulalip, WA lynwes45@gmail.com – please contact me if interested.
Sharon Gates
March 22, 2021
Amen. May he rest in peace
Gail L Coplin Goldstein
March 23, 2021
Thank you. He was a kind and generous man to all.
Deborah W.
March 22, 2021
This is what we mean when we say “a mensch.”
Gail L Coplin Goldstein
March 23, 2021
This is true. He rose above pettiness and concentrated on healing.
Kathy Collett
March 23, 2021
I first became aware of Dr Goldstein after l read his groundbreaking earlier book, The Limbic Hypothesis. I then saw him in his surgery and travelled from Australia. I couldn’t get over how brilliant, compassionate and dedicated he was. Over the years l had contact with him he continued to make amazing findings and put the focus on brain dysfunction and neuroscience. I had never met a doctor like him and doubt l ever well.
Gail L Coplin Goldstein
March 24, 2021
Thank you for your kind words. He was a true scholar, always learning and teaching, generous with his time and knowledge. There were many facets to him.
Kathy Collett
March 23, 2021
I became aware of Dr Goldstein after l read his earlier book, The Limbic Hypothesis published in the early 90s and it inspired me to travel from Australia to see him in his surgery in California in 94 and again in 95. Never did l expect to see a doctor so brilliant and progressive who made fantastic inroads into this complicated illness. My local GP at the time said he had a great understanding of pharmacology.
Two doctors acknowledged he was way above their heads and one was a fellow researcher. Unfortunately he was misunderstood as his knowledge of brain dysfunction and neuroscience research was too advanced for most.
I have his books to refer to and will miss him greatly.
Gail Kansky
March 23, 2021
Dr. Jay Goldstein was a brilliant man who was so friendly and so compassionate. His work helped so many patients. He will never be forgotten by those from the National CFIDS Foundation along with countless others around the world.
Gail L Coplin Goldstein
March 24, 2021
Thank you for remembering him. No matter how many tried to harm him and discredit his work, he was at peace, secure in the knowledge that he helped so many. That was enough for him. Money and acclaim didn’t interest him. He felt blessed he was honored with the capacity to do his research and treat his patients.
Gail L Coplin Goldstein
March 24, 2021
Thank you for your kind words. He was a true scholar, always learning and teaching, generous with his time and knowledge. There were many facets to him.
Margo Rubenstein DDS.
March 30, 2021
I will never forget what dr Goldstein did for me. He lifted me to a place of living again. His brilliance and compassion went hand in hand to help heal his patients. May his soul Rest In Peace …. god knows he deserves that… thank you.
Adam W.
April 1, 2021
I first learned of Dr. Jay Goldstein in the middle of 2013. I am a patient of Dr. Byron Hyde in Canada and one afternoon at Dr. Hyde’s office I noticed a book on his shelf titled “Chronic Fatigue Syndromes: The Limbic Hypothesis”. I asked about it and Dr. Hyde began to tell me a long and interesting story about his friend Jay Goldstein. He was described as a genius. A pioneer. Someone way ahead of his time in the CFS world.
When I returned home I searched around the internet and was able to buy copies of that book, as well as Betrayal By The Brain and Tuning The Brain. I read them all. Of course, as a patient, a lot of the information was way beyond the scope of what I could understand. However I got the gist of it. And I learned so much about this amazing doctor and his brilliance. His compassion for his patients and his dedication to them and to the entire CFS community.
I was very lucky about a year later. I was able to obtain Dr. Goldstein’s phone number at the nursing home he was living in. One afternoon I called the number and a man answered in a soft voice. I asked if I was speaking with Dr. Goldstein. The man said yes. I introduced myself and explained I was a CFS patient who was inspired by his writings. I told him that there was an entire community of patients that were regularly discussing his work and self experimenting with his protocols with various levels of success. He was delighted to hear that. We spoke for a few minutes. He was so kind and compassionate. I will never forget having the chance to speak with him. At the end of the conversation he asked if I would call him back and let him know how I was doing. I did. I called back a couple of months later and again we had a nice conversation.
I believe that he was happy to hear that his work was not forgotten and was appreciated by many, many people for all this time.
I for one am honoured I had a chance to speak with such a lovely human being and caring physician. Thank you for everything Dr. Goldstein. May you Rest In Peace.
Diane G
April 4, 2021
In mid 1990 I got sick with EBV or Mono. I went to Internist who saw I was not getting better. He did research and found Dr. Jay Goldstein in the Chronic Fatigue Institute in CA. Dr. Goldstein took his valuable time to explain CFS to a Dr who did not know of it – they talked many times, and my Dr read his book. He followed everything that this genius kind generous Dr told him. My Dr ended up being the only Dr in Baltimore that not only recognized CFS as a neurological disease but concentrated on treating as many CFS patients as he could. Johns Hopkins would not recognize this disease, but with Dr. Goldstein as his guide – he was a fervent believer. Dr. Goldstein was my hero for standing up to NIH and CDC. I was quite aware of his practice of trying as many “cures” as possible on a patient since we came thousands of miles to see him, and most had no job anymore. I had no doubt that the only cure or abatement of CFS would come from him, no other. I am sending my condolences to you Gail – for your husband never doubted for a second that this was real, and brain based. His knowledge of Pharmacology and Brain dysfunction among others were beyond any other Dr’s understanding. He touched so many lives, and I wished so much to be able to physically travel to West coast to spend one OV with him. He will be missed by all of his patients.
Tamara Moser
April 8, 2021
What a special person.
RIP. May his memory be a blessing.
Gail L Coplin Goldstein
April 9, 2021
Thank you. We miss him and if there is a special heaven for CFS patients I’m sure he’s there treating their souls, for CFS is a body, mind, and spirit/soul illness. One would hope they are all well in Heaven.
Gail L Coplin
May 8, 2021
My deep gratitude to Rabbi Grossman for his gentle, reflective support to us at such a difficult time. I know he was the conduit to peace for Jay as he entered another realm. That is such a comfort to my son and myself. I am proud of Jay’s journey in life. A man of integrity. He was able to return to his spiritual roots with the guidance of Rabbi Grossman.
Ernest Scatton
May 15, 2021
Just learned of Jay’s passing. We went to high school and college together. Shared an apartment for a semester. Shared many good times. We lost track after college. Last spoke in early 70s. Wish we had not lost contact. Deepest condolences and sympathy.
Nikki Shaff Reisman
May 15, 2021
I too went to high school with Jay and we were part of a group we pretentiously called the “philosophy club” although I don’t recall any of the philosophy we discussed. I remember Jay as intense and very bright. It does not surprise me that he was a pioneer in his field. It was great to hear of his commitment and compassion for his patients. May his memory be a blessing to us all and may his family take pride in his kindness and accomplishments.
Katherine
June 2, 2021
I was a patient of Dr. Goldstein. Brilliant, kind, empathetic, dedicated to others, are only a few descriptors for him. To say I am grateful for what he did for me would not begin to articulate how much he helped. He was my last hope in 1994. He spent *countless* hours with me, day in and day out, to put my condition’s pieces together. And he figured out that puzzle which was me, and he gave me my health back, 100%! Others like me, flew in from all over the world seeking his help. A more humble man you will not find. I will always keep him in my thoughts. I will always keep him in my heart as an example of what a human being should be.
Connie Norheim
September 6, 2021
I am a volunteer for FindAGrave. This morning I added Dr. Goldstein’s memorial to the Fargo Hebrew Congregation Cemetery at http://www.findagrave.com. I would like to create memorials for his parents and link them to his. Could you tell me what cemetery and it’s location where his parents are buried?
Linda Morisse
November 21, 2021
I was a patient of Dr Goldstein. When I heard of his accident, I was devestated.
He is the only doctor in the world that was a genius and at the same time compassionate
And caring towards his patients. We all loved
Him deeply.
I never knew he was ill himself until today.
He cared for us all, I think more than himself.
May he rest in the arms of Angels.
Alizyh
January 16, 2023
I had read about Dr Goldstein’s work on patient forums and just amazed at his understanding about intricacies of ME and his approach regarding treatment. Wish I had written to him thanking his enormous service to the patients.
Thank you Mrs Goldstein for sharing your memories.
Thank you Dr Byron Hide for your great service to the mankind.
Stephanie Meadows
March 20, 2023
Dr Goldstein was my Pediatrician who I adored. Then later in life helped me through my CFS and other ailments due to a back injury as a young adult in my 20’s. Needless to say, I knew how amazing and talented he truly was. I also know how he made this world a better place. His passion to help others was endless.
My condolences to learn of his passing as I literally just came upon this beautiful article. To learn his final blessed wishes were able to come true, warms my heart.
Thank you everyone who made his dream come true. Much love