Howard Bloom (part 2): Einstein, Michael Jackson and ME/cfs -- How Howard beat chronic fatigue syndrome

At the end of part 1 of my interview with the iconic Howard Bloom, he’d just told us about getting the flu, but instead of getting better in a few days, he got much sicker.  Nobody who gets the flu thinks that they will not recover -- we all assume we’ll feel crappy for a few days and then get back to work -- just like how we initially thought survivors of the COVID virus would get back to their pre-COVID health, but now we’re hearing reports of ongoing fatigue and neurological symptoms in a significant number of people who have had COVID.

Research of the SARS pandemic and other viral infections, tells us that not everyone will recover -- some people will develop myalgic encephalomyelitis (aks chronic fatigue syndrome), or ME/cfs, like Howard did.

As the COVID pandemic settles into our nations and neighbourhoods and we wait for treatments or a vaccine, we have to wonder how many people with COVID will remain very sick and disabled by ME/cfs? And will you be one of them?

Now here’s part 2 of my interview with Howard Bloom, the author of the newly released ‘Einstein, Michael Jackson and me’, as Howard shares how he coped with being mostly bed bound for 15 years, and what protocol he uses to keep himself pursuing truth in science.

SHOW NOTES:

 

0:05:00 Howard can't even remember being at work on Monday - about noon on Tuesday he told his colleagues they had to get him out of the office immediately because soon he'd be too weak to walk upstairs - his staff literally dragged him to the car to take him home - he doesn't know how he made it upstairs to his 4th floor apartment because he was so weak - Howard was too sick to leave his bedroom for 3 months - often too weak to think and too weak to speak 0:06:00 And the Howard got better, he thought it must have been a really bad flu - Howard did not see a doctor during this time, he was too weak, and doctors stopped making house calls - when Howard got better he went to see a fancy doctor who gave him a fancy diagnosis of Duchenne Syndrome (muscular dystrophy), but he was wrong - Howard got back to walking every day 0:07:00 One day Howard had John Mellencamp playing at Madison Square Gardens, The Scorpions playing at The Meadowlands and opening for Metallica, and Cyndi Lauper was graduating from high school, she had dropped out, but she was getting an Honorary Diploma - so Howard had a very busy day 0:08:00 "That day broke me" - he had strange, unbelievable symptoms - if it was 90 degrees out, he'd be freezing, shivering, teeth chattering - a breeze from an open window would hit Howard hard, so he had to forbid people from opening windows, even on 90 degree days - on 40 degree days, he'd be overheating and sweating - his thermoregulatory system was broken - he had no idea what the fuck was happening to him 0:09:00 At some point Howard went to his family doctor, who could not diagnose him - Howard told his staff he didn't know what was wrong with him, he could be dying, but he couldn't work any more and gave them the business - the next day he was offered $350,000 for the business, but he declined 0:10:00 Howard finished 2 weeks of work, went to his bedroom and didn't come out for 15 years for all intents and purposes - Howard did some research and told his doctor he thought he had chronic fatigue syndrome (CFS) - the doctor said there is no such thing as CFS - but 3 years later to doctor thanked Howard for educating him on CFS, because he'd been seeing it in a lot of his patients 0:11:00 Howard says that when you have an illness with no name, you are not on the map of humanity - so it is scary to have CFS and because it is scary to others, they don't even acknowledge it - if you lose the ability to walk, Howard lost the ability to speak for 5 years, not a single syllable - he also couldn't have another person in the room with him - when things like that happen, you lose connection to humanity 0:12:00 You are stripped of a sense of being human, and before that you were not even aware of that sense, but you know it when its gone - Howard said it is more unsettling than he can describe - it took Howard 3 years to re-build an identity, in the only place he could 'walk' around: cyber space 0:13:00 The 1st 3 years of being sick and bed bound, Howard tried to work at home but kept relapsing and having to start at zero again and try to build up his ability - but he was getting worse, and his 'recovery' less so each time - then he realized he was spending a lot of energy sitting up 0:14:00 By saving energy by not sitting up, Howard eventually got his voice back - Howard had his assistant set up 2 computers by his bed and jerry-rigged some foam to support the keyboard so Howard could see and use it as he lay horizontal 0:15:00 This allowed Howard to connect with the outside world - this was 1991, so no world wide web, no search engines, no Amazon 0:16:00 Through a friend, Howard took a non-paying job with Art College in Pasadena and they had created a virtual world that Howard could get into and 'walk around' using his cursor and mouse pad - he also discovered online romance - most days he could type, but not always could he lift his fingers 0:17:00 Howard became a Lothario online - he realized we get bodies we did not choose - but online we are untethered from our bodies, Howard thought that was astonishing - during those 15 years he founded 2 international science groups and wrote 3 books - but he was in solitary confinement and that produces pain of a kind no one else has experienced 0:18:00 They are a nightmare, torture, hideous because we are built for social contact 0:19:00 Howard's life was built on books, his obligation to society was books - 'books were me' - so Howard only had 2 things: his books and his marriage - then in 1994 his wife decided to divorce him - she had been leaving town to look after her mother with Alzheimer's, but leaving Howard alone for up to 3 days - it was more horrible than Howard can convey in words 0:20:00 Howard begged her not leave him alone for long periods, but she started leaving him alone longer - soon she left Howard and he found 2 people who would live in his former step daughter's bedroom and they would feed and cloth him 0:21:00 One day his wife, Linda, came to visit him, unannounced - Linda brought a lawyer with her who served Howard with divorce papers - stressful situations drove Howard's body into relapse - but Howard read the papers anyway 0:22:00 It said if you don't answer in 20 days you lose everything including the bedsheets you're lying on - his wife had brought him a Teddy bear and said she wanted to be friends - he's never spoken to her since, that was their Pearl Harbor - Howard managed to find a lawyer even though he could barely talk 0:23:00 Howard's lawyer asked for a disability exemption to attend court, but it was denied - he was too sick to travel many hours to the court from New York city to northern New York state and it would take him 3 months to recover - the judge didn't give a shit - because CFS didn't exist, it meant Howard wasn't ill 0:24:00 This caused Howard immense emotional pain, he wanted to disappear - so one night he took 120 valiums and 15 thorazine and lidocaine 0:25:00 Howard injected all 5g of the lidocaine - but he only did intramuscular and not intravenous - for 3 days he laid in bed like a corpse 0:26:00 The only muscle that moved for 3 days was his diaphragm - if blood stops circulating you're in trouble - Howard woke up 3 days later 0:27:00 He found blood had come out his chest and neck - if he wasn't a Jewish Atheist, he could've applied for Sainthood in the Catholic church - and he's lost the use of 3 limbs because of ischemia, lack of circulation - he could only use his right hand - his doctor made a house call - he said he wanted to send Howard for 7 tests - Howard said 'fuck that, I can't even get up and down my stairs' 0:28:00 He told the doctor to give him 4 days to get the use of his limbs back - Howard learned how to stand and balance - by jerking his hips forward he could do a semblance of walking - he started by walking to his living room and back, and increased the frequency by 1 each day until he got to 9 miles on the pedometer 0:29:00 His theory was that if he worked his legs everyday to overcome the eschemia, he'd get the blood flow back to his limbs, and he did get their use back - Howard was put in touch with a journalist who had been raised by evangelical parents who were trying to put rock n roll out of business 0:30:00 Howard said he could be interviewed on Christmas day, because Howard would feel especially lonely on that day - he was working for Disinformation.com, and it was headed by Richard Metzger - Howard looked him up and saw he interviewed extreme people 0:31:00 Howard called him up and said 'do you want to walk with a walking corpse? - Come to my apartment at 1pm tonight' - Richard came and talked and took notes until 6am and wrote "I have met God, Bloom is the Einstein, Newton and Darwin of the 21st century' 0:32:00 When Howard got sick, there was no info about CFS - there was an article by Hillary Johnson that had appeared in Rolling Stone about Epstein Barr virus - he thought it sounded horrible, but that he wouldn't get it....but he got it. 0:33:00 Then they found it wasn't causing CFS - Howard says that to the best of his knowledge, they still don't know what causes CFS - for Howard, any stressors would cause a relapse, so he avoided stress as much as possible - of course the divorce was a major stressor 0:34:00 So he would watch Golden Girls and read humour books - but sometimes the 'crisis' in the Golden Girls would set off Howard's stress response and it would take him 3 months to recover from an episode of Golden Girls - he tried to read the blandest writing, like James Thurber 0:35:00 Howard loves Thurber's books - one was about dogs, he loved it...until he got to page 98 when he described a dog fight, and that flattened Howard for 4 months - its hard for people who've never had the experience to conceptualize how conflict on a tv show can cause months of physical disability - but Howard has a theory based on what drugs helped him 0:36:00 We have a stress handling system and like many things in the body it works on a Cheritonian System, a balance between and excitor and an inhibitor 0:37:00 Next time a loud noise happens, check your cognitive system: it is alarmed trying to figure out what it is - our bodies have glutamate, a chemical stimulant - we also have an inhibitor called gaba - Howard started taking valium 0:38:00 He says you have a 20 minute window after a stress response to do something about it or you are fucked - but if you take valium you can avoid a relapse - but if you miss that 20 minute window, you'll be sick for months, too weak to do anything - eventually he convinced his doctor to give him oxytocin, which helped 0:39:00 Then Howard started on gabapentin - valium, oxytocin and gabapentin all feed into the gaba system, the inhibitor - so Howard's system was in hyperdrive all the time, there was no inhibitor - sometimes Howard had to take 27 valium at a time 0:40:00 At that same time the Journal of American Medical Association came out with a cover story saying sometimes an overdose of a drug could be what they need to come back to normal - Howard now takes 30 different drugs and supplements twice a day, it takes about 30 minutes - some he injects intramuscularly, like magnesium, 1 cc of oxytocin, and 2 cc of B12 methylcobalamin - has been on the regime since about 1998 0:41:00 And slowly, slowly, slowly these drugs helped him recover from CFS - by 2003 he was able to get out of the house - during the previous 15 years he had repeatedly worked his way up, adding one step at a time, until he could climb the 4 stories in his house, and then he started adding 20 feet at time on his sidewalk, but then he's have a relapse - that happened maybe 3 times during those 15 years 0:42:00 But once he got the drugs he was able to work up to 6 miles a day - Howard doesn't know of anyone else taking his regime - one day when Howard was at his 'CFS' doctor, the doctor showed him off to other patients as an example of what the doctor could do - but he was misleading them, because what he suggested was not what Howard takes - in fact, Howard found the things the doctor used to be useless 0:43:00 Howard took a very scientific approach to finding what worked - monitoring what worked, what didn't - one day a good friend contacted Howard and said the Duchess of Kent has what you have, can you write her a letter about how to cope with it - so Howard wrote a pamphlet, 16 pages - and had it updated in 2003 - realizing with CFS you have a very limited amount of energy and if you exceed it you're in big trouble 0:44:00 Howard's wife convinced Dr Derek Enlander to come see Howard - there was Dr Susan Levine too, but she required CFS patients to come into her office - 'fuck that, does she not know anything about CFS patients' 0:45:00 The most important thing Dr Enlander did was hand Howard a piece of paper with an email address of a patient in Texas - Howard contacted her and they searched online for treatment modalities 0:46:00 She would track down the doctor using the protocol and get that info back to his doctor - the doctor would sit on it for 6 months, then burp it back up as his own idea and then prescribe it 0:47:00 By experimenting, eventually Howard figured out what worked and that's why he was able to get out of bed in 2003 and resume a normal life - each day he does 1220 pseudo push ups each day, they are closer to planking 0:48:00 Howard also walks 5 miles a day, that is huge for 76 years old - and he's stronger in many ways than when he was 19 - he feels stronger and better then ever in his life, and is free of the clinical depression 0:49:00 Howard thinks it may be the gabapentin as it has shown antidepressant qualities - with CFS you have to be aware of your energy boundaries and do not cross them or you are fucked 0:50:00 Howard took a chance and was the key note speaker at a conference - Howard has a theoretical physics colleague in Moscow, and the 2 of them had been invited to address an audience of quantum phsycicists in Moscow - quantum physics is Howard, it would be like a home coming, there was no way he was going to miss it 0:51:00 Howard flew to Germany to catch another plane to Moscow - half way through the flight he started to experience CFS symptoms, by the time the plane landed, he was in bad shape - he could only lie down in the infirmary if he gave up his passport, very scary 0:52:00 Howard was so sick and desperate, he gave them his passport - then Howard realized he forgot to take his afternoon medicines - to took his gabapentin and 15 minutes later all his symptoms disappeared 0:53:00 That was in 2005 and the last time Howard had a relapse, he learned his lesson - he carries gabapentin with always - Howard says it is possible to overcome CFS, he started taking them in 1998, and it took 5 years for the drugs to accumulatively work 0:54:00 Howard tried to tell the medical establishment about his recovery and regime - but Howard says the last thing in the world he wants to write about is CFS, he's out of those woods, out of that nightmare, he doesn't want to go back 0:55:00 Although Howard been published in 12 different fields, he has no desire to research CFS - his goal is to cover many disciplines and to see the big picture, that's his task in life, that's his job 0:56:00 Howard says Dr Enlander was one of the doctors who popularized the term myaglic encephalomyelitis (ME) - Scott says his energy is flagging due to ME and explains how there is no equivalency between ME and HIV (if you get HIV meds) 0:57:00 JB (he connected Howard and Scott) wanted to know about your sleep regime - Howard says sleep was very important, one of the things that got him healthy - he had insomnia since he was 13 years old, but it got worse with the CFS - then he did a perceptual flip: instead of trying to make his body his sleep for 8 hours according to societal construct - Howard decided to 'listen to my fucking body' - he now sleeps in 2 four hour sleeps 0:58:00 He sleeps as soon as his head hits the pillow, so it turns out listening to his body is good - and if it wants 2 doses of 4 hours, so be it, and fuck the norm - he sets an alarm to wake him up 0:59:00 Howard has also adjusted his sleep pattern to communicate easier with his girlfriend in South Africa - Howard is 75 years old but he is not old, 'fuck that' 1:00:00 Founder of The Cars rock band, Ric Ocasek died about 6 months ago at the age of 75 - Howard realized that if he had of died at 75 he's never known the amazing, astonishing, ecstasy that he experiences with his girlfriend, the first time in his life - this experience is the closest to the divine he's ever experienced in his life 1:01:00 She's 50 years old, but Howard's previous girlfriend was 21 when they got together - so his current girlfriend is more age appropriate - Howard says, but never let age get you 1:02:00 Howard's new book: "Einstein, Michael Jackson and me" - its about a spiritual journey and is funny and filled with adventures and his spiritual journey in the rock and roll industry

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Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.