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The ME/CFS Stigma

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Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism.



Despite ME/CFS being an illness so severe that it has been found to cause a poorer quality of life than any major illness including cancer [1], its sufferers continue to be disbelieved, shamed and abandoned by doctors, friends and family. It is an illness that affects every major bodily system including the heart, nervous system, immune system and the production of energy. These patients are poorly served by contemporary medicine and die from heart failure and commit suicide in greater numbers and at far younger ages than the general population [2].

Why is this illness so stigmatized? The nature of the disease itself contributes to the problem. ME/CFS has several features that undermine the credibility of those reporting it.


Symptoms come and go

ME/CFS symptoms fluctuate. One moment a person with ME/CFS may be able to do many of the things a healthy person can, and yet, not much later, find themselves too debilitated to make it to the bathroom or hold a conversation. Patients encounter a number of responses to the unpredictability of their illness. One of those responses is to become skeptical.

That these ups and downs can be challenging to understand was first brought home to me by an old friend, a kind and usually sympathetic person. His cousin, who has ME/CFS, was staying with his family and he was scoffing at her claims of disability. "She claims she can't make it up and down the stairs to the third floor guest room", he told me, "Yet I noticed she had no trouble making it down to raid the fridge at midnight."

It is not only friends and family who are confused by the fluctuating nature of this illness, most doctors are not well enough informed to grasp the implications or know how to meet the challenges. They are generally only superficially acquainted with ME/CFS.

Since symptoms are often so severe, people suffering from ME/CFS are rarely seen at their worst. When their energy production has ground to an almost complete halt, they may have trouble lifting their head to drink water, let alone get out of bed or meet people. One of the most eminent ME/CFS doctors said that when a severely ill patient is standing, they are near organ failure because of the low cardiac output [3]. This is a a painful condition and many days are spent simply enduring. So when patients do make an appearance in public, they are at the better end of their illness spectrum.

The fact that symptoms appear and disappear without warning, makes testing for them as hit or miss as playing a roulette wheel. Doctors are often confused by this. (A negative test is interpreted as proof and negative test results get used against patients). When symptoms are at their worst, these patients are generally too sick to show up in a doctor's office at all. This means it's more likely than not that a symptom will not be captured on a test. And this applies only to symptoms for which there are tests. Most ME/CFS symptoms lack a test. In those cases, doctors tend to be even more skeptical.


There are so many symptoms

Another feature of this illness which makes it a challenge to being taken seriously, is the sheer number and variety of symptoms. The fact that this illness impacts every major bodily system means it generates a wide variety of symptoms. This in itself undermines credibility. For example, one of the medical criteria for the diagnosis of hypochondria is "presenting a large number of symptoms". Once a suggestion of hypochondria enters a patient's record, prejudice is engendered which can destroy the patient's chance of getting care indefinitely. Since many doctors' reactions suggest disbelief, patients with ME/CFS are typically haunted by fear of this. Every encounter with a new medical provider raises concern about being believed.


Some of the symptoms are bizarre

The fluctuations and the numerous symptoms both provoke skepticism. As if this weren't enough to make it hard for people to believe, a third feature of the illness complicates things even further....many of these symptoms are outright bizarre. This is because the disease disrupts the brain and nervous system. Patients may have a heightened sensitivity to vibratory sensations, to smells, noises and lights. These things may actually make them sicker. Complaining of things that seem mild to others, or may not even be perceptible to them, is a recipe for being discounted or considered neurotic or hypochondriacal.

ME/CFS also brings cognitive dysfunction that can lead to very strange behavior. I once put my wallet in the freezer and later tried to turn on the kitchen faucet by pressing the soap dispenser. I randomly forgot things like how to drive (I just sat behind the wheel and drew a complete blank), and yes, literally my own name, at a very inopportune moment. One time, for about three weeks, the center of my visual field was blank, making it impossible to read. Each time I tried to focus on a particular word it disappeared, while the surrounding words were teasingly there, but only if I didn’t focus on them and try to actually read them. At the time, I had no way of knowing this would pass. No one to tell, no one to reassure me that I would ever read again.

The writer Floyd Skloot found "the Xerox machine apparently stands for all machines in my rearranged brain." He asked his wife to Xerox his coffee, his son to Xerox the lawn, and assured his daughter that the doctor would Xerox her broken arm.


Not taking this illness sufficiently seriously is a tragic mistake

This is an illness that seems almost designed to make its sufferers seem crazy. Nevertheless, not taking it seriously is a tragic mistake. Whether or not these patients sound credible they have a very serious, and extremely debilitating illness.

A patient with a particularly severe case of ME/CFS, Mike Dessin, described his condition of a year earlier: "I was completely bedridden and unable to lean up more than a few inches. I was unable to read, write, understand words when spoken to, or complete a thought process. Even a bit of thinking would hyper stimulate my nervous system too much. I had severe dementia. I couldn't see the walls around me. Neurological dysfunction too obscure to put into words. In the last month before my recovery I was unconscious an estimated 90% of the time, not sleeping but literally unconscious. I was basically comatose" [4].

Several studies have found that ME/CFS results in a lower quality of life than any of the other major chronic illnesses. Records kept by the National CFIDS Association show 20% of patients died from heart failure at an average age of 58, a whole quarter century younger than the national average for heart failure. A further 20% died from suicide, at an even younger average age [1]. The sample size is too small to be set in stone, but it is an indication that failing to take this illness seriously has very serious consequences.


Yet Widespread Stigma Persists

Despite this, patients continue to suffer widespread misunderstanding, prejudice and stigma. Families often abandon their sick family members, or deny the reality of their illness. Rallying in support, as is usual with other severe illnesses, occurs far less frequently for sufferers of ME/CFS, and friends similarly drift away. Social isolation and abandonment are cruel treatment for people who have lost the lives they knew and so much else. Perhaps what patients most vitally need from friends and family is the explicit assurance that their suffering is known to be real, to be severe and that they are cared about. Surprisingly few people will even ask these patients how they are doing.


The Medical Establishment, which could protect patients from stigma, instead perpetuates it


An illness so open to skepticism and misunderstanding brings a special responsibility to health care professionals to see that patients get the care they need. They have an important role to play in validating and providing information. In reality they have abandoned these patients and perpetuated the stigma of ignorance.

The failure of the medical establishment to respond appropriately to ME/CFS has been widespread. For a number of years, personnel at the CDC made the subjective decision that the illness was not real. They pinned cartoons about "yuppie flu" to the walls in their office. They took Congressional mandated funds allocated for research into this life-robbing illness and diverted them to other illnesses.

It is now over a quarter of a century since the outbreak at Tahoe. Much research has been done. We may not have identified a cause, but we have made many discoveries. Much is known. There are hundreds of scientific research findings on neurological, immunological, cardiovascular, cellular energetic, glandular, circulatory, muscular and many other abnormalities associated with ME/CFS. There is no longer any excuse for the widespread ignorance that exists among those who are responsible for providing healthcare.



The American Medical Association has not made a good faith effort to educate professionals about this disease

Perhaps the single failure most responsible for the perpetuation of this injustice is that of the American Medical Association. Often families and friends are taking their cue from the medical establishment. If the patient had a knowledgeable doctor, this could provide the credibility and understanding that would legitimize the illness in the eyes of the patient's social group. However, the response of the American Medical Association has been cruelly inadequate. The absence of validation alone is profoundly worsening the suffering of these patients who already suffer so much.

There are no specialists for this highly complex, life-destroying illness. It is largely consigned to the primary care physician. It is absurd and disingenuous to assert that a primary care clinician could be responsible for ME/CFS care. These doctors are given only cursory ME/CFS training. How could a primary care physician seriously be expected to keep up with all the latest developments in a complex, multi-systemic progressive illness like ME/CFS? Even if it were not impractical, no real effort has been made to prepare them for this task. The CDC recommends that HIV patients be seen by HIV specialists because the complexity of the disease necessitates the care of someone solely devoted to HIV. If complexity is the criterion, ME/CFS certainly deserves its own specialty care.

Conventional specialists are equally, if not more, deplorably uninformed. Doctors who have not even read any consensus guidelines for treating patients with this illness [5] are having this task thrust upon them. Doctors are understandably flummoxed by the ME/CFS patient's presentation of symptoms. Without training to guide them, they must draw on their personal resources. Never having heard of things such as delayed POTS, or other uncommon symptoms, they typically search for an exit, which means a way to drive the patient away by one means or another.

In the leadership vacuum that exists, prejudiced doctors can and do give free reign to their subjective and damaging opinions. It is not often they state it so explicitly, but I once had a doctor who, upon hearing that I had ME/CFS literally said, "I have an opinion about Chronic Fatigue Syndrome." Many "forget" that they are not psychiatrists and resort to psychologizing, which is a form of patient abuse. Some make recommendations more appropriate for depression, "Get out more, push yourself to exercise" which is potentially dangerous advice. Others, without justification, give referrals to psychiatrists. Most ME/CFS patients have experienced several instances of such discrediting. I was personally told by one such doctor that I needed to "lose my insurance". Repeated encounters with an attitude of skepticism can cause patients to become defensive, and so appear to have psychological issues. Patients who are poor or live rurally may not have the option of looking for another doctor. The general lack of interest and support drives many patients from further seeking care. This situation leaves patients to fend for themselves. This can pave the way to hopelessness, physical deterioration and in worst case scenarios, suicide.


A doctor's role is not limited to diagnosis and treatment. Lack of available treatment is not an excuse for neglect

This irresponsible neglect by the medical establishment points to a failure to honor its social contract. A clinician's role does not begin and end with diagnosis and treatment. For example, they have been given, by our society, a responsibility to attest to a patient's functional status. This means a practitioner is obligated to do their best to assess the patient's physical limitations. With an illness that causes many disabilities for which there are no tests to measure them, a physician needs to listen openly and objectively. This is one of many roles a doctor may need to play. Our society trusts physicians as authoritative advocates for their patients, to employers, to courts of law, to government departments, housing officials and others. To simply disregard and dismiss patients until a treatment is found is to abandon these duties and deprive patients of their equal rights. Doing so can also put a patient directly in medical danger in many ways. If they need medical equipment, for example, but, their reason for needing it differs from the insurance company's stated criteria (as often happens with ME/CFS), without a doctor to make their case they don't get taken care of. Patients may have symptoms which require accommodation, whether or not these symptoms are well-known. For example, I have autonomic problems which make it necessary for the room temperature to be carefully controlled or I risk cardiovascular collapse. I have a history of near misses. One doctor prevented me from having an urgent procedure because she refused to accommodate this need on the grounds there was no test affirming it.

In 22 years of illness, and having seen many doctors, I have had only one doctor who understood the needs created by this illness and found ways to use her resources to help meet them. Dr Andrea Thach went to bat for me. She wrote letter after letter staunchly urging that my accommodations be taken seriously. She wrote a letter for ER which has repeatedly protected me. She provided what felt like shelter in a war zone. While she was my doctor, it was only my illness I had to contend with, and not the medical community as well. Patients need their doctors to stand up for them, and by and large they are not getting this support.


ME/CFS needs an energetic education campaign for all professionals

Patients suffering from this widespread condition deserve a doctor who is familiar with their illness and its complications. A great deal of current suffering would be alleviated if all doctors of ME/CFS patients could give them recognition for their severe suffering. Patients deserve a doctor who knows and can assure them they are not alone and that their condition is well documented, if not well explained as yet. A doctor can only do this if they are familiar with the subject and its medical literature. One step in this direction would be to require every practitioner to study and test highly on a consensus guidelines document such as those already created [5].

While this illness is challenging to understand, we already know quite enough that this stigma could be largely put to rest by wise leadership from those responsible. A fundamental problem lies with the failure to educate doctors in this illness. It is indefensible that they are still so uninformed regarding an illness so serious, complex and widespread.

The CDC estimated that 80% of U.S. sufferers remain undiagnosed. This is a failure that is destroying and costing lives and must be rectified. Patients deserve knowledgeable physicians for this devastating illness and its far-reaching effects. This decision lies with the American Medical Association. (The rights of self-regulation are delegated to them by federal legislation. Society can alter the terms of that social contract and reclaim some of these powers). The effect of the decisions they have made up to this point is discriminatory and a large percentage of patients end up receiving no care at all. The current practice is driving sick patients away in droves, deepening their isolation and turning many, if not most, ME/CFS patients into virtual lepers.

We are social beings and while the social exclusion and neglect of people with this illness may have been initially understandable, it is no longer ethical, humane or worthy of any person or society that would like to be considered civilized.


References

[1] The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health 2011 May 27

[2] Causes of Death Among Patients with Chronic Fatigue Syndrome. Health Care for Women International 2006 27:615-626

[3] Paul Cheney M.D. Ph.D. "Diastolic Dysfunction in CFS". September 9th, 2006

[4] Mike Dessin, in testimony to the Dept of Health and Human Services. http://www.hhs.gov/advcomcfs/meetings/presentations/dessin1009.pdf

[5] "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic Treatment and Protocols A Consensus Document". Journal of Chronic Fatigue Syndrome Vol. 11, Number 1 2003



Carol Schmid had to give up college teaching in 1994 when ME/CFS made it no longer possible for her to hold up her arm to write on the chalkboard. She lives in Oakland with her son.






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Comments

When doctors tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".
I can't think of anything that sums up the cruel irony of this kind of reaction to our situation better than this. Poking our wounds. I can't think of a better way to put it.

All I can suggest at the point where you recognize that's what's happening is: stand up, refuse to engage, walk out, seek alternatives, and don't look back. After a decade or so of similar abuse, the day I first did that was a fundamental turning point for me and I remember it vividly. From then on, things could only get better.
 
I can't think of anything that sums up the cruel irony of this kind of reaction to our situation better than this. Poking our wounds. I can't think of a better way to put it.

All I can suggest at the point where you recognize that's what's happening is: stand up, refuse to engage, walk out, seek alternatives, and don't look back. After a decade or so of similar abuse, the day I first did that was a fundamental turning point for me and I remember it vividly. From then on, things could only get better.
In my case I poked back - actually had some fun with it too :D But I think that it's just the feeling of being free of their judgements which is the most important. They're still judging, but once we get to the place where we understand what is happening to our bodies, and what is happening in their minds, and we reject them ... then those people become completely insignificant to us.

They don't hurt us anymore, or upset us, because they have been identified, cataloged, and thrown in the trash bin. We've survived them, even if it's just psychologically and spiritually, but not physically.
 
Well said val. I rejected their judgements too very early in my illness. Sure the stigma is still there but
why let their opinions (wrong) affect our self esteem. Tc .. X

Ps. I was too sick to poke back for 16 years, but not anymore. : )
 
Doctors mostly do not even belong to the AMA, which has only a couple of thousand members..
Thanks for the clarification. Maybe it's even more disturbing that such a small number of doctors have so much influence. It's my impression that most of the government health-related agencies are run by medical doctors. I wonder how many of them are AMA members.
 
In my case I poked back - actually had some fun with it too :D But I think that it's just the feeling of being free of their judgements which is the most important. They're still judging, but once we get to the place where we understand what is happening to our bodies, and what is happening in their minds, and we reject them ... then those people become completely insignificant to us.

They don't hurt us anymore, or upset us, because they have been identified, cataloged, and thrown in the trash bin. We've survived them, even if it's just psychologically and spiritually, but not physically.
This is the best advice. And having the words to poke back helps. What can you say to the classic "I'm tired too"?
 
This is the best advice. And having the words to poke back helps. What can you say to the classic "I'm tired too"?
No idea ... I've never said I'm tired or fatigued :p I focused on the most debilitating symptoms, which was PEM and OI for me.
 
No idea ... I've never said I'm tired or fatigued :p I focused on the most debilitating symptoms, which was PEM and OI for me.
Here in the U.S. its a perennial problem because the old name "Chronic Fatigue Syndrome" is the only one most health practitioners are aware of. Avoiding naming the illness is sometimes necessary, but sometimes not an option, and also not so great for our advocacy. Every apparently sane person who claims to have ME/CFS is an advocate for change.
So we get the "I'm tired too" line a lot. Last month, when a paramedic said it to me, I responded with, "When you start losing your fingerprints you might worry" because I happen to have lost mine, but I realize only 10% of pwME/CFS do.
 
Thanks for the comments. Each one is moving. It's true that there are likely other motives also for the stigma. But I believe we can do something about this. We do have power over the AMA via our government and now is a great time to flex our muscles, since President Obama has asked that ME/CFS be given high priority.

The more I have thought about what COULD help change things, the more I come back to the role and responsibility of doctors.The Canadian Consensus document instructs doctors to:

"Initiate education of the patient, their family and support network members as soon after diagnosis as possible".

Better education of doctors is relatively cheap and so should be easier to win than more expensive requests.
I'm interested in gathering a list of suggestions of helpful things doctors can do for their ME/CFS patients. If anyone has any experiences or suggestions they would be appreciated.
Thanks again for all your comments, they really encourage me to keep working on this,
Carol Schmid
Excellent article, Carol. It summarises the situation so well.

I'm in the UK, but ideas that spring to mind for things doctors should do include:

LISTEN to patients
BELIEVE patients.
SUPPORT patients in their dealings with other authorities from whom they need help.
RECOMMEND evidence-based natural interventions, such as cutting out gluten, going low-carb, pacing and resting. (Hippocrates would approve of these!)
 
An excellent post. Describing the suffering, I would go so far as to say trauma, generated by the treatment people with m.e. have received is very important. Each one of us has to make a journey to clarity, to keeping the pain of this experience conscious and reflecting what has happened accurately to each other is part of that project.

My primary reservation is this:



I find this too forgiving.

I don't believe it ever was understandable. It was always deeply unethical, a denial of human suffering not seen since the early days of the AIDS epidemic. Institutions, both government and academic, and individuals who had contempt for patients, turned away from complexity. An ignorant and lazy mainstream media never challenged this as numbers grew and our intimates and the larger world abandoned a kind of imaginative compassion absolutely essential in leading a decent life as a citizen and human being

It is my suspicion that the powers that be will seek absolution of responsibility by invoking bogus claims of ambiguity and opacity with regard to m.e. They could have known, they refused knowledge. No excuses.
Before I had ME I wasn't sure whether I believed in it, due to the conflicting info I kept coming across. But I weighed up the pros and cons of believing or not believing.

If I believed in it, and it turned out that people were just neurotic or malingering, I might look a fool and taxpayers might be paying out a relatively-small amount of money supporting them without good reason (this is the UK I'm talking about).

If I didn't believe in it, and the people were genuinely ill, that would be a terrible injustice, causing additional suffering to sick people.

I am very glad that I decided to believe.
 
Very well done. I must say that of recent years I have developed a bit of an aversion to attempting to explain this illness to others. I had just stopped doing it. But my sister read your article and responded that she had a much greater understanding of what I was going through. She has always been supportive....but now expresses even more empathy and compassion. So, that alone was worth it for me. Thanks for writing this.
 
Thank you, Carol. This is so well written. Like others here, I want to make a copy to hand over to any health professional I see that needs one.

I did get a bit of a chuckle out of the BIZARRE SYMPTOMS section, particularly this part:

"The writer Floyd Skloot found "the Xerox machine apparently stands for all machines in my rearranged brain." He asked his wife to Xerox his coffee, his son to Xerox the lawn, and assured his daughter that the doctor would Xerox her broken arm."

I am going to remember this, when I need to get something done around here and can't find the word for it.
 
In my case I poked back - actually had some fun with it too :DWe've survived them, even if it's just psychologically and spiritually, but not physically.
Psychological and spiritual survival are just as important as physical survival.

Children should not have to 'survive' the medical people who fail to provide them with care. :(
 
Very well done. I must say that of recent years I have developed a bit of an aversion to attempting to explain this illness to others. I had just stopped doing it. But my sister read your article and responded that she had a much greater understanding of what I was going through. She has always been supportive....but now expresses even more empathy and compassion. So, that alone was worth it for me. Thanks for writing this.
Thank you for sharing this. It makes me happy I wrote it
 
Psychological and spiritual survival are just as important as physical survival.

Children should not have to 'survive' the medical people who fail to provide them with care. :(
No they should'nt. I want to try to change this. President Obama is an extraordinarily open president.This a unique opportunity for action. The President had placed ME/CFS on high priority and these are the 18 months of his presidency when he is most easily able to get things done. May, ME/CFS awareness month is approaching I intend to propose a remedial curriculum for medical providers. I have had success having proposals acted on in the White House before, so I'm optimistic. I have experience teaching at medical school, so I know this is not difficult to do.
The Canadian Consensus Guidelines (a copy of which is may be given to your doctor) states that:

"Patient Support and Well' being Are the Top Priorities of Treatment"

President Obama loves personal stories.He responds to them and uses them. What I need to support my petition, are 50 of your stories of doctors or providers, or family and friends,failing to follow this principle. Or stories of when you felt really helped. Mainly I need to demonstrate I am not alone in my concern.

Do you think we could gather 50 stories? I am going to create a "Stories of Care and Non-Care" thread. The stories need to be short, under 250 words. Brief descriptions of specific incidents are best, perhaps with the impact on you or whomever you are writing about. Your stories can make a real difference.

Many people have worked long and hard to gain the knowledge we now have. Yet we arent reaping the benefits of achievments already won. We deserve to experience the benefit of all this validation and knowledge from our doctors.
Will you help us win respect and our rights to equal care?

Look for the thread later today..it will have "Our Stories" in the title. Thanks everyone who has already responded and special gratitude to any who would be willing to share in support of improving patient care. I'm sure we can achieve this. Let's seize this chance. Thanks.
 
NEW Thread on "General CFS News! I'd very much appreciate your responses to a poll I've started which asks "Have your providers initiated education of your family and support network?" We could really use some numbers on that.
I have started a thread in the "General CFS News" section named "Our Stories of Stigma and Support from Provierds and Others" Your stories would be much appreciated.
These will form part of a collection, together with a petition for remedial education of medical providers. Every story will be valued, and make our voice stronger. Thanks!
 
An excellent post. Describing the suffering, I would go so far as to say trauma, generated by the treatment people with m.e. have received is very important. Each one of us has to make a journey to clarity, to keeping the pain of this experience conscious and reflecting what has happened accurately to each other is part of that project.

My primary reservation is this:



I find this too forgiving.

I don't believe it ever was understandable. It was always deeply unethical, a denial of human suffering not seen since the early days of the AIDS epidemic. Institutions, both government and academic, and individuals who had contempt for patients, turned away from complexity. An ignorant and lazy mainstream media never challenged this as numbers grew and our intimates and the larger world abandoned a kind of imaginative compassion absolutely essential in leading a decent life as a citizen and human being

It is my suspicion that the powers that be will seek absolution of responsibility by invoking bogus claims of ambiguity and opacity with regard to m.e. They could have known, they refused knowledge. No excuses.
You make a very important point. This is medical abuse and many of us are traumatized by it. When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

.
When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

Kauri, thank you for that analogy.
 
Before I had ME I wasn't sure whether I believed in it, due to the conflicting info I kept coming across. But I weighed up the pros and cons of believing or not believing.

If I believed in it, and it turned out that people were just neurotic or malingering, I might look a fool and taxpayers might be paying out a relatively-small amount of money supporting them without good reason (this is the UK I'm talking about).

If I didn't believe in it, and the people were genuinely ill, that would be a terrible injustice, causing additional suffering to sick people.

I am very glad that I decided to believe.
Very sane and lucky that you're not burdened now by regret.

It's useful to hear how convincing the denialist views of m.e. sound.

During the last couple of months I've been revisiting the hysteria hypothesis. What these writers have in common are a desire to appear as authorities and the inability to consider consequences of the opinions they hold, consequences that should have aroused fear and trembling because it meant, if they were mistaken, condemning millions of people to great physical suffering, impoverishment, marginalization, and death. Being wrong was never a part of their moral calculus.

One of the questions the handling of all of this asks is what does it take to cut through this lack of awareness unto oblivion that happens when the ideological powers of the society are arrayed against your position.

The saving grace is that there can never be complete seamlessness. But it can certainly appear that way sometimes and up until a few years ago it did.
 
Brilliant article, one to keep, for sure. Thank you for this!