TWiV 331 letters

Robin writes:

Date of Easter

Easter is the first Sunday after the first full moon after the vernal equinox.

If the vernal equinox (March 21) is on a Friday, and there is a full moon on the next day (Saturday, March 22), then the next day (Sunday, March 23) is Easter.

If the vernal equinox (March 21) is on a full moon, the first full moon after the vernal equinox will be 28 days later (April 26). If that day happens to be a Sunday, the next Sunday (Easter) will be May 03.

If raised Catholic, and if not formally de-affiliated, one will be lowered a Catholic.

Robin

Paul writes:

In 325CE the Council of Nicaea established that Easter would be held on the first Sunday after the first full moon occurring on or after the vernal equinox. From that point forward, the Easter date depended on the ecclesiastical approximation of March 21 for the vernal equinox.

Easter is delayed by 1 week if the full moon is on Sunday, which decreases the chances of it falling on the same day as the Jewish Passover. The council’s ruling is contrary to the Quartodecimans, a group of Christians who celebrated Easter on the day of the full moon, 14 days into the month.

Jennie writes:

Don’t feel obligated to read this email on air because I’m not trying to monopolize discussion, but I want to answer a couple questions raised during the Episode 330 discussion of my letter re: ME/CFS.

Rich asked if I had a role in a CFS organization. When Vincent and I met, I was finishing my term as a member of the Board of Directors of the CFIDS Association (now called the Solve ME/CFS Initiative). Since the end of my term in 2011, I have not had a role in that or any other ME/CFS organization. Instead, I’ve focused my efforts on my blog, Occupy CFS, and on individual advocacy efforts.

Alan commented that giving more money to ME/CFS research means taking money away from another disease. It’s not that straightforward. I have documented that in FY2014, 62% of disease categories listed by NIH received an INCREASE in funding over FY2013. ME/CFS was one of only 17 disease categories out of 244 that received funding essentially flat with 2013. The remaining 31% of categories saw funding decrease. HHS employees frequently tell us there is no money, but that can’t be true if the majority of disease categories are seeing an increase in their funding. Since Alan mentioned HIV/AIDS, I checked their funding and found that HIV/AIDS research increased by $80 million from 2013 to 2014, and is projected to receive a $22 million increase in 2015. Couldn’t NIH reduce that to an increase of $15 million, and spend the other $7 million on ME/CFS? Both categories still go up, and ME/CFS’s budget would more than double. Obviously, there is money – it’s just not coming ME/CFS’s way.

There are several other things that could be done to increase ME/CFS research funding at NIH. ME/CFS does not have an Institute home. Instead, research is coordinated – with no budget and no dedicated program officer – through the Office of Research on Women’s Health. Setting aside the fact that men get ME/CFS too, this arrangement essentially means that ME/CFS research has to shake a tin can and try to get an Institute’s attention and interest. Moving the portfolio to one of the Institutes might help this situation. Second, NIH could issue an RFA with set aside funds for research into a high priority area such as large-scale validation of biomarkers, rigorous prevalence and epidemiology studies (to get at the “true case” question), and/or large -omics studies. NIH last issued an RFA for this disease in 2006, but has refused every subsequent recommendation and request to repeat the process.

Kathy asked how many non-ME/CFS experts served on the IOM panel. While the community feared there would be few or no experts, in the end the IOM appointed 8 members who had clinical, research, or personal experience with ME/CFS and 7 members who had none. The vast majority of the report’s peer reviewers had ME/CFS experience, as did every guest invited to present to the IOM panel at its public meetings. There were a diversity of views represented among those groups, but that is as it should be.

Alan rightly questioned my statement that HHS pursued this study in secret. I have accumulated documentation through personal communications with HHS employees and members of the CFS Advisory Committee, and through FOIA requests. HHS began working on the contract in early 2013, and employees were explicitly instructed not to share any information with the Advisory Committee or the public. HHS did publish notice of its intent to sole source the contract on a federal contract site on August 27, 2013, but made no announcement and never published the information in the Federal Register. Advocates discovered the posting and began an opposition effort, and the sole source contract was cancelled on September 4, 2013. No additional details were made public, despite repeated requests to HHS, until the September 23rd announcement of the contract signing as a Task Order under NIH’s standing contract with the National Academy, thus avoiding the requirement to give public notice of the specifics in advance. I made an attempt at summarizing the timeline, and why this approach was so disastrous for the HHS-community relationship, in this post just after the contract was signed.

On a more personal level, the most telling part of your discussion was Vincent’s statement that he was advised to avoid the CFS label for his son because then no doctor would do anything to help him. This happened to me. One infectious disease expert I consulted early in my illness said, “You have CFS but there’s nothing we can do for you. We can arrange for counseling to help you live with it. Maybe you’ll get better in five years.” In fact, there are things patients can do to help alleviate or cope with symptoms, but there is no systematic way to access those treatments, and almost no ME/CFS specialists to consult. The conservative estimate is 800,000 people have ME/CFS (using the 1994 Fukuda case definition), and 80% have not been diagnosed. That means 640,000 have absolutely no help and nowhere to go because they don’t even know what they have. The other 160,000 who do have the label may have to wait months or years to access a specialist, or they give up and turn to alternative medicine, or their non-specialist doctors prescribe unproven therapies like antidepressants and exercise which could be dangerous to them. We cannot allow this to continue.

My thanks to all of you for covering this issue. Public dialogue like yours can only help.

Cheers,
Jennie

David writes:

Dear Vincent and Friends,

On Twiv 330, you read a message from Michael (as opposed to a “Message to Michael”, thank you Dionne Warwick) in which he asked whether he might link up with an advocacy group for biomedical research. Some years back former Connecticut Senator Lowell Weicker,who was a stalwart champion of research while in Congress, helped launch such a group, called Research America. They appear to be very active. Here’s the link:

http://www.researchamerica.org/

I’m not familiar with the details of their work but it seems to me to be a good place for him to start.

Love your podcasts

Dave

David J. Spector, Ph. D
Professor Emeritus of Microbiology and Immunology
Penn State Hershey

Steve writes:

Interested to hear the recommendation to look at the Son Doong cave fly through, but would you also let listeners know that the cave is already threatened by developers who want (for starters) to build a cable car route through it! There really is nothing in Nature that is sacred to, or safe from, developers and other business interests.

http://www.thepetitionsite.com/takeaction/956/103/062/

Also, I was interested to hear the follow up to last week’s comment on the ‘ME’ research findings.

I did feel that Dickson was a little uninformed in some of his comments last week, but I know he meant well by them. The letter that was read out from ‘Jenny’, was very good in explaining much of the real situation for sufferers–like myself: 30y and now mostly bed bound and in constant pain and vanishing strength that no doctor cares to investigate properly: on the contrary, they like to make me feel like a criminal for even asking.

The advice you were given regarding your son was very wise: Whatever names are given to illnesses under the ‘MUS’ (medically unexplained symptoms) banner, they only serve to excuse the average medical practitioner from responsibility for digging deeper. Do not let them give your son any arbitrary labels: Insist that there is proper, step by step, logical, scientific, deduction, that at least keeps you *pointed in the direction of* discovery.

And don’t think that progress in this field will necessarily make any difference to your physicians. I waited a year to see an ‘expert’ neurologist, hoping to dig deeper into my worsening health, but, the result was, that he just arbitrarily decided that my ME diagnosis of 30y standing was wrong.

When I pointed out that–though I did not want to *stop* at this diagnosis–it, nevertheless, satisfied the criteria for all the case definitions‎, so, if it isn’t that, then what has he found to prove otherwise: he just said he’d never heard of the IOM, and didn’t have to follow case definitions, because they were only for research purposes.

When I pressed him on what he suggested it might be, he just mumbled something to the effect that it ‘might be something autonomic’. I left, stunned, that yet another professional had just given me the brush off, and that a top ‘neurologist’ seemed to think that the autonomic nervous system doesn’t come under the heading of neurology!

My brother-in-law and sister, wheeled me back to the car, and home, and I’m suffering even worse as a result of the trip out looking for help. I can’t sit up now without becoming very faint and ill, and I don’t know how much longer my body will be able to take it.

This week, I think that it might be Alan Dove who didn’t appreciate the depth of professional prejudice against ME/CFS sufferers, when he assured us that your HHS wouldn’t do anything secretive. I can’t follow all the politicking in the US system, and, to me ‘IOM’ was synonymous with motorcycle racing until this controversy came up. But I do know that one Jeanette Burmeister had to take the HHS to court to get them to comply with FOI orders to disclose documentation as to how the decision was made to award the contract to the IOM. It cost her a fortune even though she is part of a law firm: HHS strung it out as long as they could, with no regard to the cost, or to the effect this was having on the health of someone who is, herself, an ME sufferer. I’m not sure that she has all the information she requested even now.

As it turned out, the IOM panel do seem to have done a reasonable job and helped to refocus, at least the US, debate. Unfortunately, it is highly likely that, in the UK, for many ‘difficult’ (ie expensive to properly investigate) patients, the goal posts will‎ just be moved, as they have done with me for half my life, to keep me away from the facilities I need to find out what is really wrong with me. I used to run a quality control lab, and I’m quite sure that if I had had access to modern medical diagnostic facilities, I could, in all possibility, have solved the problem myself, years ago.

There is very little sign of the scientific method in medical practice. Until that is made to change, there will always be ‘ME/CFS’ and other ‘MUS’, because what we actually have is a pandemic of IPDS: Ignorant Patronising Doctor Syndrome.

Many thanks for all your programmes.

Claudia writes:

Hi Vincent,

In listening to the recent TWiV podcast about ME/CFS (329 Pox in the Balance) it was clear that your guests were uninformed about the disease ME/CFS, and had not familiarized themselves with the recently published ME/CFS Institute of Medicine (IOM) report. They expressed skepticism that ME/CFS is an established medical disease and incorrectly believed that there is no clinical diagnostic criteria, and worse yet, that patient/subjects are self-diagnosed!. With more than 17 million adult men, women and children diagnosed worldwide, it’s frustrating and surprising that so many well respected people in science and medicine continue to propagate misinformation and wrong beliefs about this disease. The obviously uninformed, biased, insulting and dismissive tone presented by your guests did not go unnoticed. Many inaccurate assumptive comments were made, some of which you quickly addressed, but others were left hanging due to the timeline of the program and through no fault of yours.

After listening I felt I faced two choices; one was to carry resentment, anger and frustration about yet another scientist spreading the many misconceptions about ME/CFS and its patient population (and I am not referring to you), or instead to treat this as a teaching moment. I was diagnosed with ME/CFS by a rheumatologist 10 years ago, after seeing many specialists and undergoing many various tests, and after enduring years of struggling to understand what was causing me to lose my ability to participate in all the wonderful, adventurous life activities my body had previously tolerated. In this regard I am not different from the majority of other patients. A former audiologist I am highly educated, a former competitive athlete, volunteer, and enjoyed international travel with my husband. This is just the short list of things my body will no longer tolerate since becoming sick with ME/CFS. Now I am a mostly home-bound patient advocate trying to create awareness and change, oh, and I dabble in art, yoga and meditation.

I appreciate all you do to find answers about this disease, and I sincerely hope you find some for your son.

Respectfully,

Claudia
Race to Solve ME/CFS

[Claudia sent this document with her email]

In listening to the recent TWiV podcast about ME/CFS (329 Pox in the Balance) it was clear that your guests were uninformed about the disease ME/CFS. They expressed skepticism that ME/CFS is an established medical disease and incorrectly believed that there is no clinical diagnostic criteria. With more than 17 million adult men, women and children diagnosed worldwide, it’s frustrating and surprising that so many well respected people in science and medicine continue to propagate misinformation and wrong beliefs about this disease. The obviously uninformed, biased, insulting and dismissive tone presented by your guests did not go unnoticed. Many inaccurate assumptive comments were made, some of which you addressed, but others were left hanging. After listening I felt I faced two choices; one was to carry resentment, anger and frustration about yet another scientist spreading the many misconceptions about ME/CFS and its patient population, or instead to consider this a teaching moment. I was diagnosed with ME/CFS by a rheumatologist 10 years ago, after seeing many specialists and undergoing many various tests, and after enduring years of struggling to understand what was causing me to lose my ability to participate in all the wonderful, adventurous life activities my body had previously tolerated. Now I am a patient advocate trying to create awareness and change.

I know your guests did not directly question the severity or disabling nature of this disease, but the undertones were felt between the scoffing. Here is what the ME/CFS IOM committee had to say about the level of debility caused by ME/CFS, “Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (Jason and Richman, 2008; Twisk, 2014).” And, “Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms. Many patients feel unable to meet their family responsibilities and report having to reduce their social activities (NIH, 2011). However, these data include only patients who were counted in clinics or research studies, and may underrepresent the extent of the problem by excluding those who are undiagnosed or unable to access health care (Wiborg et al., 2010). ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and societal levels. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). High medical costs combined with reduced earning capacity often have devastating effects on patients’ financial status.”

I’d like to take a few minutes of your time to try to address some of the myths and inaccuracies that were presented in this podcast by your guests.

Regarding diagnoses of patients enrolled in the study discussed on this podcast the samples came from biological specimen repositories of two recent, large, multicenter cohort studies of ME/CFS; the NIH study and the Fatigue Initiative Study, so you can be sure these patient subjects were correctly identified and were not self-diagnosed.
Although there is heterogeneity amongst the patient community, patients don’t have a different set of symptoms at all, and the differences are not any greater than that of Multiple Sclerosis or other complex diseases. The new immune system dysfunction data from Mady Hornig, et al explain why presentation may differ depending on duration of disease. The IOM committee who just completed the most comprehensive literature review on this disease (ME/CFS) concluded that there is a clear presentation of this disease, and they used those core symptoms to create the clinical criteria recommended by the IOM report. They felt so strongly that these core symptoms paint a clear picture of this disease separate and apart from any other disease, that it is those symptoms that make up the clinical criteria they recommend. This is not a diagnosis of exclusion.

In addition to this IOM criteria there exist several other criteria, (according to the ME/CFS IOM report there are 20 existing criteria) Fukuda 1994 used mostly here in the US, Canadian Consensus Criteria (CCC) used in Canada, and ME-International Consensus Criteria (ME-ICC) also utilized. So no, patients who are included in good peer reviewed studies are not self-diagnosed, and patients certainly don’t go to the doctor seeking a diagnosis of CFS.

As stated in the IOM report, “In multiple surveys, 67 to 77 percent of patients have reported that it took longer than a year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years (CFIDS Association of America, 2014; ProHealth, 2008). Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum (Peterson et al., 2013), and only 40 percent of medical textbooks include information on the disorder (Jason et al., 2010). ME/CFS often is seen as a diagnosis of exclusion, which also can lead to delays in diagnosis or to misdiagnosis of a psychological problem (Bayliss et al., 2014; Fossey et al., 2004; Jason and Richman, 2008).” They later state that,” ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and societal levels. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). High medical costs combined with reduced earning capacity often have devastating effects on patients’ financial status.”

As I stated above the IOM recommended criteria is NOT a diagnosis of exclusion, but rather one that is clearly defined by core symptoms not shared with other diseases. Dr. Ellen Clayton, chair of the IOM committee recently said that looking at the ME/CFS literature the most outstanding thing was how clear it is that patients all have these core symptoms. She reported that the IOM committee heard a lot from patients and advocates and read a lot of stories, and although not everyone told every aspect of their story, you could read it and you’d think, this is what this disease is. She said, “We read the literature, and as we did, and especially the primary literature, it just is so clear. How can anyone in the world say is this real? How can anyone say this is a psychiatric disorder? It is nuts to say this is primary depressive disorder. That was striking, and I read scientific literature every day.”

The patient community was not alone in their effort to protest the IOM process. The letter signed by 50 expert researcher/clinicians was sent to the NIH protesting the application of the IOM process for this disease because the contract was solidified with no stakeholder input. Many others who were also against the IOM contract for ME/CFS did not sign the letter because we felt it would not stop the process because by that time the contract had already been funded.

ME/CFS is billable for reimbursement with the ICD 9 CM code (G93.3) under diseases of the nervous system, and the disease ME/CFS is categorized by the World Health Organization (WHO) as neurological.

Of course the findings from the recent immune study by Mady Hornig cannot yet be used as a biomarker to identify this disease because it is a small study and needs to be replicated on a large number of patients.

The topic of exercise as a treatment for this disease was brought up briefly. Here is what is stated in the IOM report, “Consistent with the findings of the systematic review of Ross and colleagues (2002, 2004), studies reviewed by Taylor and Kielhofner (2005) provided no evidence regarding the efficacy of employment rehabilitation, such as CBT and/or graded exercise therapy. Variation in methodologies, outcome measures, subject selection criteria, and other factors precluded drawing conclusions about the efficacy of interventions designed to enable ME/CFS patients to return to work.”

Please understand that many of us who have been diagnosed with ME/CFS (by a medical professional) are former athletes or very active individuals. I am a former mountain bike competitor with nutrition, sleep and life habits healthier than average. There is a former Olympic soccer player who was diagnosed. We are not lazy, inactive, deconditioned, depressed people looking for a way to sit on a couch. Many have suffered many losses because of the severely disabling nature of this disease. For many of us that means we are no longer able to utilize our higher education (I have a master’s degree and was an audiologist); many were lawyers, teachers, nurses, doctors, etc. Although there is currently no known cause, no approved treatment and no cure for our disease we remain hopeful that by increasing awareness about this disease, and through educating the medical and scientific community, and increased funding the millions of adult men, women and pediatric patients will someday be able to return to our previous productive lives.

Mary writes:

While I thank you for being willing to discuss my Disease, Myalgic Encephalomyelitis (M.E.) on your show, I was rather taken aback by the number of times I heard chuckles and laughter, and in the second show, after reading Jenny Spotila’s comments out loud, the phrase, “Oh, I just don’t believe that.”

It’s kind of harsh to hear that, because we would respond with citations and hard evidence, except we’re not on the show. No matter how much Jenny explained, she was left to have to explain still more.

I was one of the first patients found to have the 37kDa Rnase-L defect. When I testified about that to CFSCC (the CFS coordinating committee at NIH that preceded CFSAC), I was told (through chuckles) that it probably wasn’t Rnase-L – just some detritus left over from evolution. I noticed that suddenly low molecular weight Rnase-L was believable when it correlated with prostate cancer (isn’t it interesting theirs was a different size?). I also struggle with a natural killer cell function of 2-3% when off meds.

When I first testified that I had been found to have extraordinarily high levels of HHV-6A in my lymphocytes, the late Stephen Straus rose up from the back of the room to assert I never had HHV-6 at all, because only two people in the nation knew how to diagnose it. After I got my bearings, I suggested he come up to the microphone and read into the formal minutes that Dr. Ablashi did not know how to test for HHV-6A (Ablashi was the co-discoverer of both HHV-6 and its two variants while at NCI working with AIDS patients; I was one of his first CFS guinea pigs.). Straus turned bright red and stalked out of the room.

A decade later, in July 2009, when in a relapse because FDA had temporarily removed the immune modulator and antiviral I have to remain on, Dr. Dan Peterson of Incline Village, NV (Tahoe) did a lumbar puncture. He found both HHV-6 and CMV active in my spinal fluid. At the time I had classic symptoms of encephalitis, plus some other serious medical problems. I was mostly bedridden and housebound (my daughter took care of me when I had the spinal tap). And here were two viruses known to impact the nervous system and possibly cause encephalitis – in my spinal fluid!

At an NIH conference that I helped organize in 2011, I found myself talking to one of the higher-ups at CDC. I told him that there were a lot of patients in what appeared to be a well-defined subgroup who suffered from immune defects and reactivated herpesviruses, specifically EBV and the beta herpesviruses, CMV, HHV-6, and HHV-7.

And that’s where I got it. “Oh, I don’t believe you really HAD those diseases.”

I beg your pardon?

“You people test positive for diseases that aren’t really there.” ????? Could you lead me to the research on that? His answer was: “Well, it happens in syphillis” and he wheeled and left the room.

Apparently, they do not “believe” that you can have chronic viral encephalitis. Either the virus would kill you or you would subjugate the virus. I have evidence to the contrary. But they do not “believe” it to be possible.

We get this a lot. “oh, I don’t believe THAT.”

Before Dr. Despommier gets another shot at saying how much he does not believe us, ask him to read the transcript from another one of your (excellent) podcasts:

http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

Mary M. Schweitzer, Ph.D.

PS – Google the name “Naomi Weisstein.” She was a pathbreaking scientist at a time when women weren’t supposed to be a scientist. But in 1983, she came down with this disease and was soon bedridden. She remained bedridden and in terrible pain and discomfort until her death last week of ovarian cancer. Her husband, Jesse Lemisch, took care of her. I have been shaken up by her death and the realization that she went thirty years without the testing and treatment I have had. There are so many.

The different estimates come from both different definitions and agendas. Most researchers use the 1999 article by Leonard Jason, who is a great source if you ever want to talk about how wildly conflicting definitions can skewer research. That was the 800,000 estimate. At the time CDC had just revealed they were increasing their estimate from 50,000 to 500,000, but none of us at the meeting were supposed to tell anybody yet because Bill Reeves wanted to publish it first. Ironically, Lenny’s paper made his superfluous and he never did! But he developed a set of questionnaires he claimed “operationalized” Fukuda but were actually based on Simon Wessely’s questionnaires, in turn based on the Oxford broad definition. In 2006 Reeves announced there were 4-6 million Americans with “CFS.” 50,000 in 1996, 500,000 in 1998, and 5 million in 2006! Either something was wrong with his methods, or the disease grew at a staggering proportion. (I choose door number 1.)

With today’s population, given the same prevalence, that would be about one million (if anything, I fear it’s more prevalent now because I think there have been a new set of cluster outbreaks in the last five years.). And that is the number I see most frequently – one million today, with 850,000 undiagnosed. The undiagnosed tend to be of lower income or people of color. I have no idea what happens to someone with no money who becomes as sick as I was. I was a historian – my husband called that the vow of poverty; he was a chaired business prof at U of Delaware who specialized in banking and taught at a lot of executive ed programs (and also worked for MLB). Bob spared no expense getting me better, but we were also lucky the money was there.

On July 7, 2013, I lost my best friend, soul mate, and long time caregiver, Bob, to bladder cancer. Unbeknownst to me, he had put together a financial plan years before so I could continue to afford Ampligen if he died. (I have had serious adverse effects to some other drugs, so that leaves me with Ampligen). I have moved to Incline Village, where I am only 2 miles from treatment – and there are fewer ghosts here.

But that makes me very rare – most people with my disease are impoverished. They cannot afford the testing and treatment I have gotten. They are dying.

Going back to the mid-1990s we had studies showing evidence of abnormal cytokine profiles, low NK cell function, the low molecular weight Rnase-L, and viruses. NIH refused to fund those studies while Straus ruled, so they died on the vine. $6 million a year is less than NIH spends on male-pattern baldness. In comparison, with half the patients, NIH spends $350 a year on MS, a disease very like my own. As Jenny said in her second letter to you – we’re not asking to reduce funding anywhere (except maybe for male-pattern baldness; Bob was mostly bald and I loved him to death) – just maybe let us have some of the increases.

Why do they keep saying to me, “I don’t believe you ever had those diseases.”?

And I do wish you the best of luck getting your son diagnosed. Try Montoya at Stanford, or perhaps David Bell in upstate New York would come out of retirement for this case, or Dr. Peterson, or Peter Rowe at Hopkins (tho he is a bit over-emphatic about the role of NMH/POTS). Come out here to Tahoe; we’ll take care of him and you and your wife get a vacation.

I hope he does not have what I have.

Mike writes:

Dear Doctor,

I’m a long time listener and love all 3 of your podcasts.

In a recent episode of TWIP or TWIM (at 68 my short term memory isn’t all that good) mention was made of dogs detecting cancer by sniffing patient urine samples. Here is a short article on a dog that can give correct results about 88% of the time.

https://www.endocrine.org/news-room/current-press-releases/scent-trained-dog-detects-thyroid-cancer-in-human-urine-samples

Best regards,

Mike

David writes:

Dear twivvians,

I have followed with interest your discussions, most recently on twiv 328, of staff scientists replacing trainees in laboratories. Although I agree that training the current numbers of students and postdocs for non-existing positions does a grave disservice to many, I wonder whether there might be a similarly serious downside to replacing many trainees with staff scientists.

Some PIs are blessed with continuous funding for as long as they wish to run their laboratories. However, for many (most?) of us, even those who have been successful for a long time, funding is much more precarious. When funding for a position is lost, one can often cobble together enough support from one’s unit to get a student or postdoc though their training period, or if not maybe find another lab for the person.

However, what if funding is lost for a staff scientist, especially a senior one whose compensation package is substantial? Will there be a job market that is flexible enough to absorb these people? If so, how mobile would they have to be willing to be and/or how transferable are their skills to another field that might be related only peripherally to their previous one? Could we end up with another group of scientists, but ones more advanced in their careers and life-stage than students and postdocs, for whom jobs are not available? Almost similar to the predicament of the PI who lost the funding, except she is more likely to have tenure and still have a job.

Maybe you and/or your listeners will have some insight to share here.

Still love the podcast,

Dave

David J. Spector, Ph. D
Professor Emeritus of Microbiology and Immunology
Penn State Hershey

Jake writes:

Firstly, a great thanks to all of you at TWIV, the podcasts are a great way for me to keep science close in mind and, distract me from the mundane interests of my co-workers. Unlike many of your listeners who write in I am not a graduate student or, doctor of any sort. My background in academia is ridiculously limited…a lot of what you fine folks say goes over my head. But, it gives me something to read about when I go home for the day and keeps my wits sharp.

I just read this article: motherboard.vice.com/read/software-is-designing-useful-microbes-that-dont-exist-in-nature?utm_source=mbfb

Possibly a pick of the week down the line. After I read this I immediately thought of comments from TWIV325. I listened to it today during my morning commute and first hour of building pipelines in the unpredictable Mid-Western weather. You were talking about the possibility of garage biologists producing weapons grade microbes that could possibly escape control or, otherwise be intentionally released. To me the idea of producing microbial weapons at my workbench at home is absurd as it would likely infect me and the ones I love before anyone else. Any logical science enthusiast is probably going to arrive at a similar conclusion and avoid the risk altogether. With the work going on at DARPA (regarding the forwarded article) I would much rather see the biological replacements for industrial chemical processes and, other forward looking things or that sort come from the garage. I’ve got a long way to go before contributing to that, I’m still trying to get my lightbulb PCR cycler to work.

The weather in Kansas City, Missouri is currently 7.8C, mostly sunny, very light winds from the South.

Thanks again for the entertainment and thought provoking conversations I will keep listening and studying
Best Regards,
Jake