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Thursday 16 April 2020

Life with Autism under Lockdown






I thought there should be at least one post about how life has changed during Covid-19.  Where we live, Monty’s life goes on pretty much as before, now we are back to home schooling - but that is nothing new for us.

School starts at 9am, there are 3 or 4 classes a day online from school and then activities and exercises till 3.30pm. 

We have PE, art and music like at school.  Piano practice continues most days.

Monty’s latest addition to his routine is reading 30 pages a day of a novel in the evening.  Now that he has started, he insists on doing it every day.  Having finished the (boring) books from school, he is going to start reading his brother’s collection of Biggles novels. They are about a fictional fighter pilot, the series starts in 1916 and continues for 50 years (the author got old, but Biggles did not).  We are going to set the scene with one of the old epic films about fighter aces from 1914-18.

The parks are closed and we have a curfew starting at 5pm weekdays and now across the entire weekend.  If you live in a small apartment, as many people do in the areas with the most strict lockdowns, life clearly will be difficult for people who do not understand why their movements have suddenly been restricted.

In many countries parents have asked for special treatment for those with autism, so that they can go outside more often. This has just been implemented where we live.

Parents are now going outside to walk their child with autism during the curfew and then neighbours are calling the police to report them.  In some countries you can get a special paper confirming your right as a disabled person to be taken outside, when everyone else has to stay at home.

In our case, Monty accepts that schools, parks, restaurant and cafes are all closed, but he expects that come September life will return to normal and his brother will go back to University.  Monty is lucky to live in a house with a garden, so he has plenty of space and lots of things to do.

Life with autism under control is not so demanding, even under lockdown.

When Monty was eight years old, we had nine months of autism out of control, which then results in a self-imposed lockdown.  That period ended just before Monty started his Polypill therapy in 2012.

I would not want to be in lockdown with an adult-sized person with untreated severe autism.


The Big Issue

Recently I was asked for some advice by Monty’s assistant; her friend works publishing a magazine homeless/disadvantaged people sell on the street.  One of their best “sellers” is a young man with mild autism.  He actually lives with his parents – he is not homeless.  He is struggling under the lockdown, because the magazine is not being published; he still turns up at the office to collect his copies to sell, even though there are none.

The young man became very anxious and so his parents gave him something to calm his nerves (which turned out to be Valium).

I was told that he had been given some pills, but in spite of these pills he got worse and started being aggressive, which is totally out of character.  This was all (falsely) attributed to the Corona virus changes to life.

As usual you do have to double check the facts.  Where we live a man with “mild autism” does not mean a person with Asperger’s, it means a person with Autistic Disorder (i.e. severe autism), but not such a bad case, so the young man can walk to work by himself and has some speech. 

I was asked what pills the parents could ask for, to calm him down. I explained that for anxiety people with autism often get prescribed benzodiazepines, but for aggression and self-injury they might get antipsychotics.  Neither are a good choice in most cases.

“And … there should not be any side effects.
The pills he currently takes are just something very mild”

So, what pills had he been given? It was a local brand name I did not know, so I looked it up and it was Valium/Diazepam, the benzodiazepine.

Adult with autism going crazy after Valium? that sounds familiar.

You don’t want Valium, you want 2mg of Bumetanide.

People who show a negative reaction to benzodiazepine drugs, usually prescribed to calm you down, are very likely to be bumetanide responders.

Benzodiazepine drugs increase the effect of the neurotransmitter GABA. In most people GABA is inhibitory, so increasing its effect will calm you down and ultimately sedate you.

In people with GABA working in reverse, it acts as excitatory.  This will reduce cognitive function and affect mood and behavior.  If you “turn up the volume” of GABA by taking a Benzodiazepine drug like Valium, you will make such people go crazy, with aggression and self-injury.

Hopefully the parents of the young man will get my message and stop giving Valium.  It would be nice to think they will also start to give Bumetanide, but that is their choice and I assume they most likely will not.  A diuretic for autism? How crazy is that.



How crazy is an anti-malarial for Covid-19?

How are the French doing with an antimalarial and an antibiotic for Covid-19, that I referred to in an earlier post? Say farewell to Covid-19 in just five days, it appeared.







By now the French have treated thousands of people with their new off-label therapy.  Also being developed in Marseille is Bumetanide as an off-label autism therapy by Neurochlore.  It looks like free thinking is flourishing on the Cote d'Azur.   

The data below is from the Marseille University Hospital Institute for Infectious Diseases (IHU Méditerranée Infection) and the wider hospital group in Marseille called APHM, which means Assistance Publique-Hôpitaux de Marseille.

The public hospitals in Marseille have treated 4,337 Covid-19 patients and 78 died (1.8%).

Within that group 2,671 were treated at the specialist IHU hospital with the antimalarial hydroxychloroquine (and some with azithromycin in addition) and of those that received at least 3 days of treatment 11 died (0.4%).

I think we can infer that 1,666 patients did not have hydroxychloroquine and 67 died (4%).

So if taken sick with Covid-19 in Marseille, tell the ambulance:

         "IHU Méditerranée Infection et vite !!"

If needed you can add:

        "Appuyez sur le champignon!"





As I suggested in my post on Covid-19, hydroxychloroquine looks a very good bet.  The supposedly fact-based media (CNN, BBC etc) continues to say there is no hard evidence to support the use of hydroxychloroquine.  How much evidence do you need?

To measure the success of hydroxychloroquine, you just count the bodies.

If this is such a struggle, what hope is there to ever prove a drug can work for such an ill-defined condition as autism?

Until you have been vaccinated against Covid-19, it appears that what you need is hydroxychloroquine + azithromycin and some potassium, to treat the hypokalemia caused by Covid-19. Ideally you would also have a home test for Covid-19, which are getting much cheaper, so you do not take the drugs unnecessarily.

Fortunately where we live hospitals are routinely giving hydroxychloroquine + azithromycin, but ideally you would start the antiviral therapy before getting ill enough to go to hospital.

Tom Hank’s wife was complaining recently in the media about the side effects (nausea, vertigo etc) of the chloroquine she was given in hospital in Australia for Covid-19.  I think that is a little ungrateful. Untreated Covid-19 can have a pretty terminal side effect.






Friday 3 April 2020

Anorexia, Orthorexia, PCOS, Fertility and Elevated Autism Risk (and don't forget Paternal Obesity)



 Super skinny is a poor role model and another
driver of autism risk via ensuing endocrine problems


While some types of autism cannot easily be prevented, those that relate to the lifestyle of future parents clearly can be reduced.

Rather than just be shocked about an “autism epidemic”, with ever increasing prevalence, why not start doing something about it?  People are staying at home to reduce the incidence of Covid-19; the risk of autism can also be reduced.

Today’s post is about the young females who, under peer pressure and Instagram pressure, choose to starve themselves in the pursuit of looking “good”.

School lunches are a daily subject of conversation in our house, since I always ask Monty, now aged 16 with autism, what he had for lunch at school.  Monty’s assistant tells me that even though the lunches at school are not bad, he is one of the few to eat them all.  The boys generally just eat the meat and potatoes and do not touch the fruit, vegetables and of course not any salad.  The girls eat next to nothing.  Why do the already skinny girls at school eat nothing?  It's cool to be super skinny and the popular role model is Billie Eilish. So, the girls want to be skinny and feel depressed.

In schools in rich Western countries, the perceived eating problem is usually too much, rather than too little.  When I drop off Monty, aged 16 with autism, at school all I see is skinny kids.  Some do a lot of sport and athletic should not be confused with anorexic.
Anorexia is nearly always an issue in young females, rather than males.  It is also very common in females with Asperger’s type autism, who are naturally prone to obsessions.

For most people the skinny look is just a passing issue, does it do any long-term harm?  Apparently, it does.

This post was prompted by reading about a “celebrity” mother with all 3 kids diagnosed with autism.  She is clearly an Instagram type, even in middle age.

She looks healthy (thin), had her children young, she is not one of those high IQ types of autism parent; the Dad is not a maths professor.  Why are all the kids diagnosed with autism?  Fortunately for her, it is not severe autism; the children can talk, her  six year old son is asking about corona virus and they play together for Instagram. They are fussy eaters and do not like loud noises.  

Being a former model and now a “celebrity”, it should not be a surprise that she reveals having had anorexia for ten years, then was diagnosed with PCOS, had the consequential fertility problems, but wanted a large family.  Now she has 3 children with autism; she seems not to have made the connection between PCOS and autism. (Clearly endocrine dysfunction may not be the only contributing factor)

The Mum is an Ambassador for the UK’s National Autism Society (NAS).  I think the most useful role she could perform would be to go into schools and tell skinny girls to eat more, rather than keep pushing her look good (i.e. skinny) and exercise more image on social media.  Perhaps the NAS needs to learn more about autism.

Orthorexia is another common eating disorder. It is characterized by a fixation to eat only healthy foods, or to avoid entire food groups. It is often accompanied by exercise addiction, where exercise is foremost in life, rather than including exercise in a balanced lifestyle. 

I am quite sure you could make an algorithm to identify people with Orthorexia or Anorexia, with or without exercise addiction, based on their Instagram posts. Perhaps they should get sent a warning of likely endocrine disorders later in life, including fertility problems and a substantially higher risk of having children with autism. Perhaps, “You too could become an Ambassador for the UK’s National Autistic Society”, might shock some skinny girls into eating more. These are likely the very same "cool" girls who make their female classmates with Asperger's type autism feel socially excluded. 

      Instagram use is linked to increased symptoms of orthorexia nervosa


PCOS

Polycystic ovary syndrome (PCOS) is a set of symptoms due to elevated androgens (male hormones) in females.

Not everyone with PCOS has polycystic ovaries (PCO), nor does everyone with ovarian cysts have PCOS.

Women diagnosed with PCOS have increased risk of having a child with autism.

Women diagnosed with PCOS have an increased chance of being autistic themselves.  This not surprising since elevated male hormones in women is associated with autism, as in Turner Syndrome, where one of the X chromosomes is missing, or partially missing.

People with Turner syndrome have a lifelong endocrine disorder, that was not of their making; they are almost always infertile.

People with anorexia have given themselves endocrine problems that may lead to a diagnosis of PCOS.

PCOS is associated both with being overweight and with being malnourished/anorexic.

There are different criteria used to diagnose PCOS, but it affects about 5-10% of females.


Anorexia and Endocrine Disorder

For the easy to read version, here is a good article: -

Overweight and obese patients are not the only patient group that needs lifestyle modification



Warren said that the incidence of fractures in this population when they are younger is up to eight times that of the normal population. “There is a high incidence of vegetarianism along with anorexia nervosa that may also contribute to osteoporosis because of fat avoidance and low protein, calcium and vitamin D intake,” Warren said. This problem is best treated nutritionally. With a return to a normal weight significant increases in bone density are seen and fractures will also stop, she said.
In addition, a lack of estrogen may also contribute to this extensive bone loss. Hormone replacement or oral contraceptives can be used as a secondary measure but appear to help only if that patient is eating well and near a normal weight.
Another common problem in women with anorexia nervosa is infertility. Many patients with eating disorders will not ovulate. Warren said that although patients may present with a fertility problem, endocrinologists should be sure that any underlying nutritional problem is resolved before a patient is encouraged to conceive. “You can help patients to conceive using drugs, but it is really not recommended until they have a normal BMI,” she said. “There is a higher incidence of miscarriage in these patients and higher incidence of low-weight babies due to intrauterine growth retardation.”
If the return to a normal weight does not solve the fertility problems, endocrinologists should also consider a premorbid hormonal imbalance. Warren said that some patients who have had anorexia nervosa may also have an anovulatory disorder like polycystic ovary syndrome. “Patients are overweight and then lose too much weight,” she said. “As they gain back weight, they return to their premorbid anovulatory state and although they may be making estrogen, they are not ovulating on a regular basis.”
Patients with anorexia nervosa may also present with symptoms that appear to be endocrine disorders but may in fact be a result of altered nutritional intake.
“Sometimes patients have low thyroxine and triiodothyronine,” Warren said. “They present with pseudo-hypothyroidism. It may be very mild, but endocrinologists have to be aware that this syndrome may present and it is not really hypothyroidism. It is just a reaction to severe nutritional deprivation.”
In addition, because patients with eating disorders may be compulsive water drinkers, they may also develop hyponatremia. “You have to look very carefully at how much [water] they are drinking,” she said.



Anorexia nervosa is a psychiatric disorder characterized by altered body image, persistent food restriction and low body weight, and is associated with global endocrine dysregulation in both adolescent girls and women. Dysfunction of the hypothalamic-pituitary axis includes hypogonadotrophic hypogonadism with relative oestrogen and androgen deficiency, growth hormone resistance, hypercortisolaemia, non-thyroidal illness syndrome, hyponatraemia, and hypooxytocinaemia. Serum levels of leptin, an anorexigenic adipokine, are suppressed and levels of ghrelin, an orexigenic gut peptide, are elevated in women with anorexia nervosa; however, levels of peptide YY, an anorexigenic gut peptide, are paradoxically elevated. Although most, but not all, of these endocrine disturbances are adaptive to the low energy state of chronic starvation and reverse with treatment of the eating disorder, many contribute to impaired skeletal integrity, as well as neuropsychiatric comorbidities, in individuals with anorexia nervosa. Although 5–15% of those affected by anorexia nervosa are men, only limited data exists regarding the endocrine impact of the disease in adolescent boys and men. Further research is needed to understand the endocrine determinants of bone loss and neuropsychiatric comorbidities in anorexia nervosa in both women and men, as well as to formulate optimal treatment strategies.



Autism four times likelier when mother's thyroid is weakened


Pregnant women who don't make nearly enough thyroid hormone are nearly 4 times likelier to produce autistic children than healthy women, report scientists from the Houston Methodist Neurological Institute and Erasmus Medical Centre in an upcoming Annals of Neurology.



Polycystic ovary syndrome and autism: A test of the prenatal sex steroid theory

Elevated levels of prenatal testosterone may increase the risk for autism spectrum conditions (autism). Given that polycystic ovary syndrome (PCOS) is also associated with elevated prenatal testosterone and its precursor sex steroids, a hypothesis from the prenatal sex steroid theory is that women with PCOS should have elevated autistic traits and a higher rate of autism among their children. Using electronic health records obtained from the Clinical Practice Research Datalink (CPRD) in the UK between 1990 and 2014, we conducted three matched case-control studies. Studies 1 and 2 examined the risk of PCOS in women with autism (= 971) and the risk of autism in women with PCOS ( n = 26,263), respectively, compared with matched controls. Study 3 examined the odds ratio (OR) of autism in first-born children of women with PCOS ( n = 8588), matched to 41,127 controls. In Studies 1 and 2 we found increased prevalence of PCOS in women with autism (2.3% vs. 1.1%; unadjusted OR: 2.01, 95% CI: 1.22–3.30) and elevated rates of autism in women with PCOS (0.17% vs. 0.09%, unadjusted OR: 1.94 CI: 1.37–2.76). In Study 3 we found the odds of having a child with autism were significantly increased, even after adjustment for maternal psychiatric diagnoses, obstetric complications, and maternal metabolic conditions (unadjusted OR: 1.60, 95% CI: 1.28–2.00; adjusted OR: 1.35, 95% CI: 1.06–1.73). These studies provide further evidence that women with PCOS and their children have a greater risk of autism.

Maternal polycystic ovarian syndrome in autism spectrum disorder: a systematic review and meta-analysis.


There is evidence showing a positive correlation between prenatal androgens and their effect on the development of central nervous system and the autistic spectrum disorder (ASD) phenotype in offspring of mothers with polycystic ovary syndrome (PCOS). We applied a systematic review to investigate whether women with PCOS have increased odds of having a child with ASD, while, secondarily, if these women themselves are at high risk of having the disease. Major databases from inception until 14th October 2018 were searched. The primary outcome measure was the odds of an ASD diagnosis in children of mothers with diagnosed PCOS, while the secondary outcome was the odds of ASD diagnosis in women with PCOS. Scheduled subgroup analyses were according to the time of birth and maternal age.Ten studies were eligible for inclusion, including a total of 33,887 ASD children and 321,661 non-ASD children. Diagnosed PCOS was associated with a 1.66 times increase in the odds of ASD in the offspring [95% CI: 1.51, 1.83, p = 1.99 × 10-25, 7 studies, I2 = 0%, τ2 = 0]. Women with PCOS were 1.78 times more likely to be diagnosed with ASD (95% CI: 1.10, 2.87, p = 0.0179, 5 studies, I2 = 85.4%, τ2 = 0.2432). Additional analyses did not change the initial result. The overall quality of the evidence was high. The pooled effects size displayed low heterogeneity for the primary outcome. While the heterogeneity in the secondary outcome appears to attenuate when only high quality studies are synthesized, still the result exhibits significant heterogeneity. Τhe available data allowed a subgroup analysis only for classification system for PCOS diagnosis and showed a significant increase of ASD diagnosis in the offspring of women with Read Code and ICD diagnosed PCOS. In conclusion, the available evidence suggests that women with PCOS have increased odds of having a child with ASD, an effect size estimate based on a large number of patients from studies of good quality. Regarding the evidence on the prevalence of ASD in PCOS women, results suggest that women with PCOS are more likely to be diagnosed with ASD.


As I have pointed out in earlier posts there is an association between parents who experience fertility problems and those who have children with autism.  PCOS is only one risk factor, auto-immune conditions affect both fertility and autism risk.  This was noted by one American fertility clinic, which decided to create a prevent autism website.


As specialists in reproductive immunology, we treat numerous patients who have suffered previous miscarriages and other pregnancy complications. Many of these women have had at least one child on the autism spectrum.
The most common question we encounter from our patients is, "Are the two outcomes connected?" Our patients want to know if diagnosis and treatment for the immune-related causes of miscarriage may also lessen the chance of a having a second child diagnosed with Autism Spectrum Disorder (ASD).
The Centers for Disease Control & Prevention (CDC) recently reported that about 1 in 68 children are diagnosed with autism. Accordingly, there are millions of couples asking the question, "Can we reduce our chances of a second child with ASD?"

In an effort to discover the answers my patients and countless other families are seeking, we have created this informational website. Our practice is currently investigating the following:

·         Can autism be prevented by treating immune-related issues during pregnancy?
·         Can we identify those babies that are most susceptible to these inflammatory responses from women with known or as yet unknown underlying autoimmune issues?

What We Know So Far

For some time now, we have noticed a trend among patients: Mothers with autoimmune disorders who experience an inflammatory flare during the second trimester appear to have an increased risk of having a child on the autistic spectrum. The correlation seems stronger in mothers who have had previous miscarriages and / or a previous child with ASD. Recent studies have also noticed the connection, citing data gathered from the CDC.
Because the second trimester is when critical brain development takes place, it seems logical to conclude that any hindrance to fetal growth at this time, including a trigger of the baby's autoimmune issues due to an overactive immunological response from the mother, could potentially be detrimental to the cognitive progression of the child.
Autism rates are on the rise, and it is our belief and experience that this is due to the many "triggers" present in our diets, as well as the medications that our "at-risk population of women" (women with underlying or known autoimmune syndromes) are exposed to.


Conclusion

If girls need a role model, best not to choose a skinny one. What about one that smiles (sorry, Billie Eilish) and eats.

Athletic good looks are not the same as being malnourished.

Undereating can be as harmful as over-eating and can cause permanent damage.

Autism is multifactorial, which means a long list of different things, either by themselves, or in combination can cause it.  Since the severity of symptoms needed to warrant a diagnosis of autism has fallen dramatically over the years, issues like PCOS are likely behind many people’s autism diagnosis. Some cases of PCOS are likely genetic, but some are self-induced and so preventable.

Not all people with an endocrine disorder will get a PCOS diagnosis.

All endocrine disorders in mothers are linked to autism.  For example, Type 1 diabetes (T1D), Type 2 diabetes (T2D) and Gestational Diabetes (GDM) all increase autism odds.


·         4.4 for exposure to T1D
·         3.6 for T2D
·         2.9 for GDM by 26 weeks
·         2.1 for GDM after 26 weeks
·         1.8 for no diabetes






Source: https://jamanetwork.com/journals/jama/fullarticle/2685775
Data is from Southern California



If you are worried about an “autism epidemic” do something about it.  Encourage healthy eating and a healthy body image; some may need to revise what they think of as healthy.  Models and pop stars are generally a bad example.

There are numerous other preventable factors that increase autism prevalence/severity, some come from the mother, some from the father and some from the environment. (Recreational drug use, alcohol consumption, lack of exposure to the expected bacteria from pets and other domesticated animals etc). 

This post was really about elevated male hormones in females affecting their offspring, but of interest is that obesity in fathers (and as we already knew, in mothers) appears to have a major impact on autism incidence. 

Obesity among fathers appears to have a greater effect on severe autism incidence than obesity in mothers.  "Normal" BMI is often quoted as being 18-25.

Parental body mass index also seems to affect different severity of autism to different degrees.  I did rather suggest this when I wrote about PCOS above, meaning since autism is multifactorial, if you have no genetic predispositions to autism, being super skinny is adding just one set of risks. You are adding one bale of straw to the camel's back, so to speak.  

Here is the effect of body mass index of both parents on the risk of offspring later being diagnosed with Asperger's type autism. OR = Odds Ratio, so greater than one is increased risk and less than one is reduced risk.




Asperger's

Here (above) the skinny mother increases the odds ratio that her children will have mild autism, but this is not severe non-verbal autism. The same risk increase effect applies to skinny fathers.

The effect is not the same when you look at who later gets diagnosed with Autistic Disorder (Severe Autism)



Autistic Disorder (Severe autism)

In the above chart, being an anorexic mother has almost no effect on the odds that her child will have severe autism.  Having a skinny father is associated with a reduced chance of severe autism.

The real takeaway point from the study is don't forget about Paternal Obesity, it is not just about the mother.


Source: Parental Obesity and Risk of Autism Spectrum Disorder

"Paternal obesity is an independent risk factor for ASDs in children. The associations should be investigated further in genetic and epigenetic studies."












Thursday 26 March 2020

Covid-19 – Friends, Survival of the Fittest, Focus on Reality and Forget about PC



Replacing the EU Flag with the Chinese Flag in Italy

In times of crisis people often find out who their friends really are.  In Northern Italy teams of doctors and equipment arrived from China, Russia and Cuba.  The citizens of a town in Italy have taken down the blue EU flag and replaced it with a red Chinese one.

Some Americans on social media think it is a "photoshop job".  Where we live Chinese doctors have also arrived, along with donated ventilators and other equipment.  The Chinese flag is fluttering on many video/digital billboards.

We should note that Italy sent aid to China, when Covid-19 first appeared. 
  
In most countries treatment guidelines have been published to determine how to treat patients and how to ration the limited available medical resources.  There is nothing new in rationing medical resources, it happens every day.

In terms of therapy, the note linked to below (in English), is very good.  It includes both chloroquine and hydroxychloroquine, mentioned in my initial post.  Note the dosage is tapered, as I suggested in my post.  In the case of hydroxychloroquine, you only need 12 tablets; so a standard pack can treat 5 adults.  Time for emergency production to start? Or we have to wait for the Chinese to do that for us?




Note that these drugs may have side effects, in particular QT prolongation of your heart beat.  This is a possible side effect of many drugs,  You would not want to combine multiple drugs that prolong QT. The QT interval is measured by ECG.






I am pretty sure I took chloroquine many years ago when travelling in a malaria infected area and never had an ECG.  It is clearly a case of balancing risks.  



Back to triage 

In the Napoleonic wars the French came up with the word triage and by the time of the World War One they had fine-tuned it. Those collecting the injured had to categorize patients into one of three groups:-

·         Those who are likely to live, regardless of what care they receive
·         Those who are unlikely to live, regardless of what care they receive
·         Those for whom immediate care might make a positive difference in outcome

In the current Covid-19 outbreak patients are first split into two groups: -

·        At-risk group, based on age and existing medical conditions 
·        Not in an at-risk group, based on age and existing medical conditions

Severity of the Disease

·        Mild to moderate, the case for most people (no pneumonia or oxygen required)
·        Severe, breathing difficulties requiring oxygen
·        Critical, ARDS (Acute Respiratory Distress Syndrome), Sepsis, Multi organ failure.  The people with critical severity require mechanical ventilation and intensive care

Frailty assessment

The clinical frailty scale (CFS) is used to give a rating from 1 (very fit) to 9 (terminally ill).  Each patient is given a CFS score when it is necessary to ration care.

People with a disability obviously do not want to get a black mark in the frailty assessment.

When overwhelmed with sick people, those working in hospital are not going to be able to devote time to people who are disruptive (aggression, self-injury etc) or those who need a family member at their bedside.

Another issue is where to put disabled people after treatment, so they do not block hospital beds needed for others.  In Italy hotels have been taken over to house people who are still infectious, but not seriously ill.

People who have intellectual disability (ID/MR) are not so easy to house, as this recent article highlights.

Developmentally Disabled New Yorkers Stuck in Hospital After COVID-19 Recovery
According to AABR ( Association for Advancement of Blind and Retarded), a non-profit with a New York State contract to house roughly 200 adults with developmental disabilities, their staff does not have enough necessary masks and gowns to safely retrieve 12 autistic and developmentally disabled residents who are ready for discharge after being treated for coronavirus.

Nine of those patients tested positive and six more hospitalized are awaiting test results. The 12 patients no longer require hospitalization, but are still considered contagious.  

“We have twelve individuals who have been hospitalized who are ready for discharge and isolation at home, but we don’t have a safe plan to bring them home,” said Libby Traynor, executive director of AABR, which used to be known as the Association for Advancement of Blind and Retarded, an 80-year-old organization that runs 22 group homes in the five boroughs.  Residents in six of those group homes have tested positive for COVID-19. 

Because of their intellectual disabilities, many of the AABR clients are unable to speak, let alone comprehend and follow safe social distancing and isolation rules, and the virus appears to be spreading rapidly within their facilities.

"It’s a pretty big ask to ask folks to take care of individuals, and they don’t have the protective equipment that they need,” Traynor said.


Survival of the Fittest

People affected by disabling conditions are worried that they might suffer from the rationing of hospital resources.  In times of crisis political correctness goes out of the window and it is back to survival of the fittest.  Younger healthier people get priority because they have more potential future years ahead of them and they recover faster and make space for the next patient.
  
Complaining that it is not fair is not going to help you.  Assigning ventilators by lottery, as some suggested, is just deluded. Fortunately, rationing life-saving treatment is nothing new and systems are in place to maximize the public good.



He, too, asked the Department of Health and Human Services to take action to stop rationing.
The letter, dated March 18, asked the department to "quickly issue a notice to physicians and hospitals specifying the applicability of non-discrimination requirements" of federal disability civil rights law.
Romano says he got a response from Roger Severino, who heads the HHS Office for Civil Rights and that he's now been talking to officials there about taking action.
"We're working very, very closely and very hard to make sure that we get some form of guidance out to the medical community as soon as possible," Romano says.
It's still unclear. If the federal government will respond. And if so: How forcefully.

If you are at high risk, self-isolate.  It is up to you if you want to self-treat, but it is wise to know what you are doing.



An Arizona man has died and his wife is in critical condition after they ingested chloroquine phosphate - an aquarium cleaning product similar to drugs that have been named by US President Donald Trump as a potential treatment for coronavirus infection.
The couple, in their 60s, experienced immediate distress after swallowing the drug, an additive used at aquariums to clean fish tanks, according to Banner Health Hospital in Phoenix.
Chloroquine phosphate shares the same active ingredient as malaria drugs that Trump has touted as possibly effective against Covid-19, the potentially life-threatening disease caused by the coronavirus.

According to the CDC’s at-risk list, people with Classic/ Kanner’s/ Severe autism are at elevated risk from Covid-19.  I have my doubts that young people in this group are at any elevated risk, if they are in good general heath.  Admitting a child with this level of autism to hospital for several days, alone, might cause problems (for the child and the hospital).


Missed Chemotherapy

Many medical procedures have been cancelled.

People are complaining that the delay disembarking from their cruise ship is affecting their chemotherapy. 

They might want to skip the article below from an oncologist.




In the above article the oncologist is brutally frank about the benefit of chemotherapy in most cases.

In effect, she is saying not to worry if you have to stop your chemotherapy.  The positive results in trials do not reflect the real world, where people have comorbidities etc. She says that “Patients are often astonished to hear that common therapies offer less than 5% benefit. The more lines of chemotherapy, the less the chance of success. Hand in hand with benefit goes harm.”

You do wonder why the bar is set so low for not very effective cancer therapy and yet so high for autism therapy. One pill is supposed to works for hundreds of different autism variants. All avenues are pursued to treat a person with cancer, but no avenues are pursued for someone with autism and intellectual disability. 

The same is actually true with dementia drugs, which are pretty much a placebo for the family members, rather than an effective therapy.


Conclusion

The currently recommended Chinese solution is mass testing to identify all those carrying the virus, most of whom have minor symptoms or no symptoms and then isolate them, so they cannot infect their family members and others.

My solution would be mass treatment of healthy people (no people with abnormal ECGs) with prophylactic doses of Chloroquine, to stop the virus spreading.  The drug is very cheap and it is much easier to make more of this drug than millions of ventilators. Once you take the drug the effect will last for weeks (the half-life is one month), so you could treat whole cities, one by one.  Many old people with arthritis take chloroquine or hydroxychloroquine every day, so I think the QT risk can be managed. 

Chinese doctors found that treating health workers with prophylactic doses of Chloroquine gave them protection from catching the virus from their patients.  15% of those with confirmed Covid-19 in Spain are health workers, so a little advice from China might be in order.   A trial in the UK is planned.

Chloroquine Prevention of Coronavirus Disease (COVID-19) in the Healthcare Setting (COPCOV)

Once hospitals get over-loaded, as they now are in Italy and parts of Spain, there are inevitably people who do not get fully treated.

If you are in the CDC’s at-risk group, it would seem smart to start treatment at home, when the symptoms start, and hopefully avoid the need for triage and “frailty” assessment a few days later.

Anti-viral therapy is most effective when taken early on and in later stages, not surprisingly, has little benefit.

Fish tank cleaner will kill you rather than the virus, but the pharmaceuticals proposed in the medical guidance note from Belgium are saving lives.