The Nightingale March / April Newsletter - Dr Byron Hyde

[Alvin2]

Nightingale’s March and April 2021 Newsletter

Please copy any part of this letter to your M.E. patient friends, M.E. Associations or physicians. You have our permission to use any part of this newsletter.

Free Download (14 Page PDF):
An Introduction For Physicians and Patient*
To Modern SPECT Technology


Item 1: Dear readers, thank you so much for your ongoing support in our efforts to sell the book
Understanding Myalgic Encephalomyelitis. We still need to sell about 380 copies just to cover our cost, but with your support we know it’s possible. Please spread the word. The book is available at nightingalepress.ca, amazon.com and amazon.ca.

Item 2: Free consultation with Dr. Hyde for any patient who purchases a copy of Understanding M.E. You can obtain a free 15-minute SKYPE or Face Time interview with Dr. Hyde to answer your personal question. After purchase of our book at nightingalepress.ca just contact our office and office@nightingale.ca to book an appointment.

Item 3: How to Understand Segami Brain SPECT on M.E. and toxic chemical injury patients. At the request of many M.E. patients and their physicians, they have requested that I send them more information on Segami brain SPECT. This newsletter contains information on having a brain Segami SPECT performed on M.E. patients. This is not just important; it is essential to for any physician to understand the location and degree of the brain injuries following the various enterovirus infections which give rise to either polio or M.E. I suggest you have this document printed out on a colour printer.

Many of the patients who believe they have M.E. have brain injuries from either infections of chemical or toxic brain injury. The knowledge of how much injury the brain has suffered will go a long way to obtaining a disability pension. This brain injury information is not available in either an MRI or CT scan. If you do not have a hospital or clinic with Segami software in their department, just do an HMPAO SPECT and the image can easily be transferred to a location that has the software.

Item 4: Any donations to Nightingale Research Foundation will be highly appreciated. We need donations to keep the Foundation operating.

Please stay safe from CORONA 19. Obtain your immunization as soon as possible.

Best wishes.

https://mailchi.mp/nightingale/the-february-nightingale-news-bulletin-4776546

 

[Dufresne]

This is not just important; it is essential to for any physician to understand the location and degree of the brain injuries following the various enterovirus infections which give rise to either polio or M.E. I suggest you have this document printed out on a colour printer.

Many of the patients who believe they have M.E. have brain injuries from either infections of chemical or toxic brain injury. The knowledge of how much injury the brain has suffered will go a long way to obtaining a disability pension.

This is why Dr Hyde is not the right doctor for me. He's only interested in confirming we have some sort of irreparable brain damage, and then we can get on disability. Not very inspiring.

 

[Alvin2]

This is why Dr Hyde is not the right doctor for me. He's only interested in confirming we have some sort of irreparable brain damage, and then we can get on disability. Not very inspiring.

There are no ME treatments available at present, no prescription medication has any evidence of efficacy that stands up to a double blind placebo controlled trial.
So in your opinion what should Dr Hyde be doing differently?

 

[Dufresne]

There are no ME treatments available at present, no prescription medication has any evidence of efficacy that stands up to a double blind placebo controlled trial.
So in your opinion what should Dr Hyde be doing differently?

Trying to help patients feel better. I myself feel much better from a variety of interventions. None of which were suggested by Dr Hyde. He refused to prescribe me anything. He also told me I didn't have Lyme because I'd be in pain from head to toe if I had. He was wrong about that.

I remember talking with him about Dr Cheney's work, which he wasn't too familiar with, and he suggested Cheney was overly focused on the heart because of his own heart problems. Fair enough, but you could also argue Hyde was overly focused on enteroviruses as "the cause" for ME/CFS because of his experience with polio.

I would say at least half the patients I've come across have found treatments that help them. Dr Hyde is not the guy to help us find these.

Incidentally, the other half, those that don't find treatments that help, are largely made up of people who subscribe to the doctrine that there are "no double-blind placebo controlled studies showing any benefit..."

 

[Alvin2]

Trying to help patients feel better. I myself feel much better from a variety of interventions. None of which were suggested by Dr Hyde. He refused to prescribe me anything.

Alternative medicine does help some people and there are anecdotal drug treatments that help some but not others. However in most cases it seems the drugs help people who don't have ME but something with similar symptoms. Or the odd time i have heard of people improving for a bit then getting worse again.
His research area was not drug testing so i understand why he would not want to prescribe things off label, and it would be nice if there were people whose area is off label drug experimenting.
I can find a million naturopaths who will prescribe the most random treatments and besides an empty wallet most of them don't do much. And in general they seem to believe people have candida, need to avoid wifi/cell signals need "adaptogens" or have adrenal insufficiency.
If he had an actual clinic with multiple specialists innovating on finding symptoms and tests that correlate and trying off label treatments that would be great but that is not what his research focus was.
AFAIK there are no ME clinics in Canada, there are several in the USA. That is something to address but i don't blame Dr Hyde for choosing a focus that is inconvenient to what you want.

He also told me I didn't have Lyme because I'd be in pain from head to toe if I had. He was wrong about that.

I don't know enough to say whether this is correct or not, but in no disease does any one doctor (except House on TV) know everything. I would not ask an ME researcher to treat me for Lyme. That said if he gave you incorrect information that is not good.

I remember talking with him about Dr Cheney's work, which he wasn't too familiar with, and he suggested Cheney was overly focused on the heart because of his own heart problems. Fair enough, but you could also argue Hyde was overly focused on enteroviruses as "the cause" for ME/CFS because of his experience with polio.

To be honest i am not a big proponent of his polio views. Sometimes it is better to do nothing than make things worse but of course even better would be to have something that can help people.
The funny thing is that Dr Hyde was forced to retire for medical malpractice, not becasue he gave off label treatments that harmed people but becasue ME is a fake disease and he believed people who have the symptoms.

I would say at least half the patients I've come across have found treatments that help them. Dr Hyde is not the guy to help us find these.

This is great to hear. How did they find these treatments?

Incidentally, the other half, those that don't find treatments that help, are largely made up of people who subscribe to the doctrine that there are "no double-blind placebo controlled studies showing any benefit..."

The problem with ME compered to something like MS or Parkinsons is that we have almost nothing to go on and its a wastebasket diagnosis. If you have common diseases they either have diagnostic tests or a well elucidated and tested diagnostic procedure. There is no blood test or MRI or any diagnostic test for Parkinsons but the testing package commonly used has been researched, proofed by clinical and statistical analysis, and is very good at discerning Parkinsons from other diseases.
For ME we have nothing even close, people who have everything from autoimmunity to ALS to depression to Narcolepsy to EDS to Lyme to hormone deficiencies to genetic abnormalities are diagnosed with ME/CFS becasue the CCC and ICC are not sensitive enough to exclude people who don't have ME with a high confidence level.
This sucks and makes things even harder, without a diagnostic that can weed out ME we have trouble gaining legitimacy ,and without a clean cohort to run trials on or money to do them or scientists working to figure out what the condition even is or being able to exclude treatments becasue if someone has a high viral load and has ME symptoms then antivirals may fix the problem but they never had ME and if we get an ME drug its not going to help that or the person with depression or Narcolepsy or whatever.

If Dr Hyde was the only thing standing between ME medical research and eternal damnation we would have a problem but in the end no disease has only one researcher with one hypothesis. Everything from Parkinsons to Alzheimers to cancer has hundreds if not thousands of scientists worldwide who have theories and are working to elucidate, test and advance their theory hoping to prove it correct. Most fail becasue theories are a dime a dozen, the chance that any one theory ends standing up to scrutiny, research and leads to treatment is probably one in thousands. We need more brains working on this instead of attacking one of the few who is. And attacking a theory because it has not led to a treatment yet means every other researcher from OMF to wherever is also bunk because so far we have zilch, not even a theoretical disease mechanism. But if we are to figure out this disease we need to accept that almost everyone will be wrong when they chase a theory and only one in thousands or tens of thousands of future theories that are not even invented yet will end up being right. This is part of how medical research works, this is how the sausage is made.

In summary Dr Hyde has a theory, helps people exclude other conditions and helps people get disability becasue he has no cure for them. He doesn't do experimental treatments. We can fight him for helping people put a roof over their heads or we can say he is a piece of the puzzle and keep looking, hopefully others will set up clinics for those who are willing to do experimental off label prescribing. And hope the government does not revoke their medical licenses as well for being even "worse" than Dr Hyde by not only seeing patients with the fake condition called ME/CFS but "illegally" trying to treat it with prescription drugs.

I'm not sure in Ontario if its currently legal to prescribe drugs off label, though in general these days doctors don't seem to get prosecuted for it unless there are complaints. Though an ME clinic would have a bullseye on its ass the day it opens.

In the end we have no actual treatment for ME, we have anecdotal reports of people sometimes improving on things that don't work for others, often only for short periods, many are misdiagnosed and drug trials have yet to give us anything statistically significant and we have no disease mechanism, we are shooting in the dark.

 

[Dufresne]

Indeed it's important to note that Dr Hyde helped patients in providing legitimacy to their suffering, getting them recognized by government and insurance companies. This was his forte. His focus on enteroviruses was a good one, though I would’ve liked to see him consider that these viruses hadn't necessarily exited the stage. I believe this recurrent hit and run theme has done a lot to stall the research over the years. I continue to hope technology will eventually get us on the right track.

Another thing worth mentioning about Dr Hyde is he's a nice guy, with good bedside manner. He certainly takes his time with patients. I guess I wish he was a bit more open-minded with his approach. He seemed to lose interest in my case when I passed my tilt-table test. I had labs that were off and he agreed there was something wrong with me but said I didn't have ME.

I noticed in Dr Hyde’s recent comments about Dr Goldstein’s passing that he thought of him as “a genius.” Dr Goldstein was of course about “Tuning the Brain,” specifically the limbic system, with various substances. So Dr Hyde admires this approach? Strange, as it always seemed to me he was claiming the limbic dysfunction was due to brain damage and that nothing much could be done. Furthermore I don't think a SPECT scan is a good way of determining if someone has "brain damage." Dysfunction, yes, but if you look at Dr Amen's research in ADD he shows how people's SPECT scans change with treatment. In fact this is a great use for this technology, determining how a patient responds to treatment.

This sucks and makes things even harder, without a diagnostic that can weed out ME we have trouble gaining legitimacy ,and without a clean cohort to run trials on or money to do them or scientists working to figure out what the condition even is or being able to exclude treatments becasue if someone has a high viral load and has ME symptoms then antivirals may fix the problem but they never had ME and if we get an ME drug its not going to help that or the person with depression or Narcolepsy or whatever.

But if we are to figure out this disease we need to accept that almost everyone will be wrong when they chase a theory and only one in thousands or tens of thousands of future theories that are not even invented yet will end up being right. This is part of how medical research works, this is how the sausage is made.

Do we really imagine it helpful to think of ME/CFS as having one cause and requiring only one treatment, the Koch's postulate thing? I'm fairly sure that if we do we're screwed. Just my sense, judging by all the things that are wrong with me. All of which bugger up the terrain, cause a unique picture of suffering, and all of which need to be addressed. This is the approach in Lyme circles these days: mold, Lyme, co-infections, MCAS, trauma, etc. In the end it'll turn out that it's these sorts of things that impinge on, yes, the limbic system and screw everything up, that's the crux of it. One has to keep fixing things until the system rights itself. I wish it were easier, but oh well.

Regarding treatments, there's an interesting thing happening over time on the internet: approaches that work float to the top, and you can develop a knack for sifting through them, furthering your theories, trying new things, and then reporting back. There are also great clinicians, able to figure out much of what's going on and sharing their perspectives and treatments that have been tried on thousands of patients.

 

[Alvin2]

Do we really imagine it helpful to think of ME/CFS as having one cause and requiring only one treatment, the Koch's postulate thing? I'm fairly sure that if we do we're screwed. Just my sense, judging by all the things that are wrong with me. All of which bugger up the terrain, cause a unique picture of suffering, and all of which need to be addressed. This is the approach in Lyme circles these days: mold, Lyme, co-infections, MCAS, trauma, etc. In the end it'll turn out that it's these sorts of things that impinge on, yes, the limbic system and screw everything up, that's the crux of it. One has to keep fixing things until the system rights itself. I wish it were easier, but oh well.

We do not know if ME/CFS is one disease. If it is then that disease mechanism will need targeting, and in many serious condition it affects many facets of a patient's body.
That said with crummy diagnostic criteria and doctors not well trained to diagnose it many people with other diseases are misdiagnosed with ME/CFS. Which is even worse, in many cases those diseases have treatments and until the patient is diagnosed with the correct condition they are cruelly being denied treatment which may be available to them.
Finally there may be more than one disease which presents similar enough to be diagnosed as ME/CFS. An example is that treatable autoimmune conditions are sometimes labelled as ME/CFS and when finally discovered patients are treated and get better. It will be a bittersweet day when we get an ME test or treatment, those that don't respond will find out they were duped all along and if they had kept digging may have been treated long ago.
Going back to Dr Hyde he was but one player with a theory. I personally suspect his disease mechanism theory was wrong. But it takes thousands of wrongs to get to right and if we snuff any theory that we don't like without investigating it we will stay stuck forever. However we must also not get attached to any theory until its proven and very reproducible.
And as you said he helped patents get diagnosed and he helped them get disability so they would not end up on the streets. He helped many in the ways he could.

Regarding treatments, there's an interesting thing happening over time on the internet: approaches that work float to the top, and you can develop a knack for sifting through them, furthering your theories, trying new things, and then reporting back. There are also great clinicians, able to figure out much of what's going on and sharing their perspectives and treatments that have been tried on thousands of patients.

This is medicine in general but the internet does add accelerators and wrinkles. Gwyneth Paltrow's "medical" nonsense is a good example of a wrinkle and Rituximab is a good example of accelerator.

 

[woozy]

Indeed it's important to note that Dr Hyde helped patients in providing legitimacy to their suffering, getting them recognized by government and insurance companies. This was his forte. His focus on enteroviruses was a good one, though I would’ve liked to see him consider that these viruses hadn't necessarily exited the stage. I believe this recurrent hit and run theme has done a lot to stall the research over the years. I continue to hope technology will eventually get us on the right track.

Another thing worth mentioning about Dr Hyde is he's a nice guy, with good bedside manner. He certainly takes his time with patients. I guess I wish he was a bit more open-minded with his approach. He seemed to lose interest in my case when I passed my tilt-table test. I had labs that were off and he agreed there was something wrong with me but said I didn't have ME.

I noticed in Dr Hyde’s recent comments about Dr Goldstein’s passing that he thought of him as “a genius.” Dr Goldstein was of course about “Tuning the Brain,” specifically the limbic system, with various substances. So Dr Hyde admires this approach? Strange, as it always seemed to me he was claiming the limbic dysfunction was due to brain damage and that nothing much could be done. Furthermore I don't think a SPECT scan is a good way of determining if someone has "brain damage." Dysfunction, yes, but if you look at Dr Amen's research in ADD he shows how people's SPECT scans change with treatment. In fact this is a great use for this technology, determining how a patient responds to treatment.





Do we really imagine it helpful to think of ME/CFS as having one cause and requiring only one treatment, the Koch's postulate thing? I'm fairly sure that if we do we're screwed. Just my sense, judging by all the things that are wrong with me. All of which bugger up the terrain, cause a unique picture of suffering, and all of which need to be addressed. This is the approach in Lyme circles these days: mold, Lyme, co-infections, MCAS, trauma, etc. In the end it'll turn out that it's these sorts of things that impinge on, yes, the limbic system and screw everything up, that's the crux of it. One has to keep fixing things until the system rights itself. I wish it were easier, but oh well.

Regarding treatments, there's an interesting thing happening over time on the internet: approaches that work float to the top, and you can develop a knack for sifting through them, furthering your theories, trying new things, and then reporting back. There are also great clinicians, able to figure out much of what's going on and sharing their perspectives and treatments that have been tried on thousands of patients.

How are you doing? Why did Dr Hyde think you don't have ME?

 

[wastwater]

 

[wastwater]

Not to forget the older M.E crew
Some things he says have held true for me like the hypothyroidism no antibodies being present
And In the video seems like a pre stroke diffuse encephalopathy as I seem to remember dr my hill mention

 

[Dufresne]

How are you doing? Why did Dr Hyde think you don't have ME?

I passed a tilt-table test. After that he didn't bother ordering a SPECT scan; I think because I didn't fit his theory of ME.

He ran a bunch of labs. My ACE was high, and he discovered I have a 2:1 AV block (heart conduction issue). He said the latter was likely congenital, though I wouldn't be surprised if it was due to infections. I used to get a lot of skipped beats when my babesia was untreated. He did say I "have something," based on the elevated ACE.