Patient-led support group challenges come under two general types,
- A) problems with subject matter or the nature of information, and
- B) problems with communication ethics or tone/manner.
The support group’s content and manner ought to uphold the standards and goals of Thyroid Patients Canada as a whole.
We are an organization strongly committed to scientific evidence-based advocacy and support as well as compassion and respect for one another.
We also have to be aware of Facebook policies, Canada’s laws, and the potential misunderstandings that can occur across languages and cultures.
With both TP.CA and Facebook standards in mind, this is what we see as challenges as we move forward, along with some suggested solutions:
Click each section to expand:
1. The sharing of disproven thyroid myths.
It is not ethical to allow debunked myths to recirculate perpetually without correcting them.
Some thyroid myths and unscientific ideas circulate like viruses, but they can be dismissed with verifiable facts and good reasoning.
It is not ethical to stir up confusion and unnecessary doubt on matters that are not, in fact, doubtful.
On the other hand, it’s unethical to represent as universally good or bad something that depends on many factors for it to be good or bad.
Some thyroid myths are fairly simple and small-scale.
They propagate among patients through the use of simple phrases like “I can’t convert T4.”
Such a simple phrase expressed in such an extreme manner can give the impression that we are naive, unscientific people.
At its worst, a naive thyroid patient might actually believe it is true and become unnecessarily fearful of LT4 therapy in case they personally “can’t convert.”
If it were true that some people could not convert, LT4 monotherapy in a thyroidless person would be a death sentence to a fraction of the population. Instead, what happens is that their health and well being can suffer tremendously from being a poor converter of T4 hormone.
Poor conversion is a real phenomenon, and it can be established very simply and accurately:
- Refer to thyroid science on the topic, such as Midgley et al’s 2015 discussion of wide variation in patients’ response to LT4.
- Use Spina-Thyr (an app developed by J. Dietrich, a member of the team that wrote the article) to analyze a person’s FT3 and FT4 thyroid lab results while on LT4 monotherapy. Then look at what Midgley and team say about your GD (global deiodinase efficiency) score in the article.
Some thyroid myths can be dangerous.
For example, thyroid pharmaceutical myths are dangerous.
- I have heard people say that T3 is addictive like cocaine. Ridiculous. If that was true, all people with healthy thyroid glands should stop taking the extra dose of T3 from their own thyroid in the early hours of the morning, when their circadian rhythm provides it.
- Some have said that desiccated thyroid is harmful because it contains “too much” T3. Excess depends on whether a person has a deficiency for which they must compensate. If they already have too much T4 in their blood, it will also be converting to T3 in cells and adding to FT3 in blood. If FT4 is simultaneously lower while FT3 is higher, it keeps a person from becoming thyrotoxic.
- On the other side of the continuum, I have heard people say nobody can become “optimal” on synthetic LT4 monotherapy. That’s ridiculous. Both scientific data on LT4 patients’ symptoms as well as patient experience proves that LT4 can be optimized, but in some patients it may require low or suppressed TSH. It’s a fact that LT4 can be overdosed to yield high FT3 concentrations in some people, and therefore some people convert T4 quite well.
Let’s just stop these myths, which are based on thyroid pharmaceutical prejudice.
- All thyroid meds provide hormones our bodies perceive as “bioidentical” to our own.
- But not every thyroid pharmaceutical or combo works for everyone.
- There are some patients who can only do well on one of these three thyroid medications.
What is the harm?
- Slandering the medication indirectly slanders the person who needs it and thrives on it.
- A patient may become fearful of the very thyroid pharmaceutical or combination that might help them overcome health challenges.
- Bashing a medication can bias doctors against prescribing it for someone who needs it.
Diet myths and thyroid
On some diet topics, like low-carb, gluten-free diets or AIP (autoimmune protocol) there’s debate about whether they are harmful or beneficial. Don’t propagate myths based on extreme diet claims.
- Some websites say “Diet X is bad for thyroid hormone conversion”
- Other websites say “Diet X helps thyroid patients lose excess weight and gain health”
There are many problems with making extreme all or nothing statements.
- Each diet comes in many forms. For example, there are degrees of low-carbohydrate and ketosis.
- Calorie restriction (fasting) is known to cause TSH reduction and low T4-T3 conversion, but you can restrict calories mildly or selectively in food groups without causing this effect in healthy people.
- Many experiments have only been done on thyroid-healthy people.
- Each thyroid patient is unique. Some may have insulin and blood sugar challenges without an official diabetes diagnosis.
- Avoiding gluten is not like avoiding an essential nutrient, and eliminating it does not require one to consume a glut of unhealthy “gluten free” products.
- Experience shows mixed data: Some patients find health benefits, while some patients find no difference, and others suffer.
Myths that propagate biochemical bigotry
Biochemical bigotry is the belief that one set of thyroid hormone levels and TSH levels or ranges is “euthyroid” for everyone, and what resides above it is always thyrotoxic, and below it, always hypothyroid.
One only needs to read enough thyroid to understand these basic facts:
- Even in thyroid health, an individual set point is different from the statistical range for the population.
- The thyroid hormone system (the HPT axis and beyond, to peripheral transport, metabolism, and receptor signalling) is amazingly flexible and complex, a system of “relational stability,” as Hoermann and team explain.
- TSH, FT4 and FT3 can’t be judged separately in isolation from each other. They are a shifting triangle that shifts in relation to environment and internal needs. There are many compensatory mechanisms and few absolute limits.
- One’s set point can lower during a severe “nonthyroidal illness” and rise high during recovery, showing the need for optimal levels to adapt.
- Different thyroid diseases in combination with other diseases and genetic handicaps can temporarily or permanently shift one’s thyroid hormone economy.
- Different thyroid therapy approaches will affect TSH, FT4 and FT3 in different ways.
Therefore, to some degree in health and even more so during thyroid therapy for a unique expression of a thyroid disease, “optimal” thyroid hormones are individualized and may vary over time.
Finding optimal is not easy for some people. For some individuals, optimal may lie well outside the healthy norm.
Myths that are blind to toxicity and side effects
In other cases, the science is not dubious about potential harm due to toxicity levels and side-effects.
Science has a lot to say about thyroid-sensitive substances like iodine, selenium, “goitrogens,” fluoride and endocrine disruptors.
Sometimes their potential harm or benefits depends on whether you have a functioning thyroid gland or autoimmune thyroid disease susceptibility.
Consider that the person sharing or stating a myth may be unaware that it’s a myth, and be gentle and respectful as you inform them.
If a shared source is promoting information that can be proven false or misleading, members and moderators have the duty to respond with the facts, ideally with a link to a source that explains.
- Consult more than the advocates for a substance or diet, such as Dr. Brownstein on iodine or Dr. Davis on gluten.
- Also search the topic key words with the words “myth” or “hoax” to see if there are websites that reasonably debunk something a “myth.” If someone claims that it’s a myth, don’t just believe them, but search & think more deeply to understand whether it is, and if so, why.
- Go directly to the thyroid science, the source, and hear what they have to say. Browse more than just the first few results. There’s a wealth of old and emerging science available to promote cautious and safe advice and prevent dangerous advice.
- As you search and browse, don’t just see what you’re looking for, since it’s a natural cognitive bias to seek to confirm your beliefs. Allow observation to loosen your grip on your biases. For example, if you are observant, you’ll be able to see not only the articles on fluoride levels in treated water, but the potential relevance of fluoride content in teas.
If it is a myth, after the original poster is given a reasonable acknowledgment that something is a myth, a post or comment might be edited by its author, or self-deleted or removed by a moderator.
Alternatively, the post may be closed to further comments but could remain in the forum as evidence of how the support community tried to deal with it openly and fairly.
If a member continues to push a debunked belief, a moderator should step in to bring the dialogue back to the current state of evidence.
If a member is still not willing to submit to reason and evidence and insists on promoting an opinion that they hold dearly, they may be removed from the group if it is a dangerous or misleading myth.
2. Conspiracy theories
Here is the definition of a conspiracy theory:
“a theory that explains an event or set of circumstances as the result of a secret plot by usually powerful conspirators” (Merriam-Webster).
Notice the words “secret plot.”
Allowing a patient support group to share, discuss and spread unfounded “back room” conspiracy theories and mistrust of institutions is of little practical use. It can lead to excessive emotional distress and antagonism.
Realize that this type of theorizing will likely never have enough quality evidence to conclusively prove them true or false.
As long as the theories remain based on COVERT collusion and big missing pieces in the puzzle, it’s speculation.
The emotions these conspiracies raise can become addictive. Promulgating and consuming a conspiracy becomes a salacious form of fear-entertainment similar to watching a horror movie.
Critique of open, obvious policies and paradigms is NOT a conspiracy theory
It’s important to distinguish a conspiracy theory from pointing out mistaken paradigms in openly published statements and facts in mainstream health care.
Certain mistaken paradigms can be proven to be unscientific based on comparing A) published scientific research articles with B) published guidelines and policies.
The scientific facts are published. The policies are published. It’s not that hard to point out the inconsistencies and erroneous thinking between them.
We stand on a solid evidence-base as well as an ethical footing when we point out the lack of scientific basis for these paradigms and policies!
An evil intent on the part of pharmaceutical companies and medical associations cannot be proven and need not be theorized, but an evil outcome is nevertheless occurring to some patients. It ought to be stopped. And that’s why we have a public blog.
But back to the topic of supporting each other in our private group…
Consider that a thyroid support group should be focused on solutions and assistance for individuals, not wallow in making arguments about policies and paradigms that are only usefully made in the public sphere on our blog or our Thyroidpatients.ca public group, focused on public advocacy.
In a support group, we can offer individual patients suggestions on an individual level.
- The scale of peer advocacy and assistance is different: it’s localized.
- The evidence base is different: it’s individualized.
We can focus on suggesting ways of convincing and persuading individual doctors given the data we’re told about their individual challenges and the patient’s unique health data. We can pool our knowledge to offer tips to locate doctors nearby who may see through these paradigms.
Consider how covert conspiracy theories can incite additional undue panic, stress and distrust and might need to be carefully moderated.
Do not bash “Big pharma” as if all pharmaceutical companies are evil, because we all need pharma and they can do a lot of good.
Consider the difference between an attitude of reasonable vigilance, critical thinking and wise skepticism on the one hand, and habitual cynicism and alarmism on the other hand.
Do not favor “mainstream” news or scientific sources just because they are “mainstream,” nor favor “alternative” sources because they are “alternative,” but rather pay attention to the evidence and logic. What is currently alternative may someday become mainstream, and will crossing that line make it bad?
When there is little to no evidence to support a theory, frame it as “maybe” or “possibly,” and do not let it carry undue weight.
Hesitate to share a freshly minted accusation if there are doubts about its evidence-base. Wait for more information to come into light, and wait to see if the accused parties, experts, and skeptics respond.
Be willing to interrogate your own doubts and fears if you personally agree with or propose a conspiracy: When one is disposed to believe something, one often looks for evidence only to support it rather than disprove it.
First, seek to verify and investigate the facts before easily agreeing with an accusation or suspicion to mistrust an entire industry or sector or a specific organization within it.
If there’s insufficient evidence, do not raise fear and distrust in entire institutions and professionals. Attempt to minimize exaggerated fears when people raise them.
If evidence exists and room for reasonable doubt persists, consider how we can advise each other take steps to protect ourselves and others if there is a systemic problem within or between institutions.
If a conspiracy or harmful policy is proven to be based in verifiable fact, one has the duty to take it outside of the support forum and move it through a proper institutional, legal and political processes.
Moderators and administrators must discern when too many posts on a distressing, doubtful aspect of thyroid care are being posted. We may need to encourage a subgroup to discuss the issue elsewhere.
Off-topic, risky public controversies
3. Off topic, risky public controversies.
It is inevitable that major health crises like COVID-19 and enforced vaccinations will grasp public attention, anxiety, and public debate about risks and benefits, freedom and coercion, unknowns and knowns.
Facebook policies and sanctions
Recently, public news articles are showing that Facebook is on the verge of cracking down on groups and pages that share what they consider fake news on COVID as well as other hot topics.
Here’s an excerpt from a recent article, April 16, 2020:
- “Facebook to tell millions of users they’ve seen ‘fake news’ about coronavirus“
- The decision comes after a group found that roughly 40 percent of claims debunked by fact-checkers remained on the social networking giant.
- By MARK SCOTT 04/16/2020 09:01 AM EDT, LONDON
- “Millions of Facebook users will soon be told if they saw online posts containing misinformation about the coronavirus pandemic after the social networking giant announced Thursday its latest plans to contain the spread of rumors, half truths and lies connected to the public health crisis.
- “The move, which will start over the next three weeks, represents a major step by Facebook — an acknowledgment that its efforts to scrub the platform of falsehoods related to the coronavirus have not been sufficient to stop millions of people sharing, liking and engaging with misinformation.”
Who knows where this will end up? Merely “informing” people that they’ve seen fake news is a mild measure, but Facebook has already gone through a phase of shutting down health groups and pages in 2018.
We have to be vigilant to what mainstream public health officials declare “false news” about health at this time, and at any time. This is the society we live in, where misinformation goes viral and gets mixed up with critical debate and the lies and truth will all go down the drain together.
This is the caution given now to all moderators of Facebook groups, within the group interface about “False news”:
Facebook fact-checkers hunt for trigger vocabulary when they look for “fake news.”
Evidence on new controversies is often muddy
Conclusive evidence on the current virus is lacking in 2020 because the science is developing
- Some science may be driven by panic and profit.
- Some scientific evidence will openly contradict other scientific evidence.
It may take years to determine what is really true. Until the dust settles, policy makers, and to some degree, individuals, must make difficult choices.
It’s not our topic area of expertise
- Our purpose and topic is clear. Most thyroid patients do not sign up for a support group to hear thyroid patients discuss opinions and stances on non-thyroid topics.
- It’s challenging enough for a patient’s support & advocacy organization to deal with controversies within health care when they do concern thyroid.
These debates have evolved into deeply divided and angry pro- and con- communities, each accusing the other of being unscientific, immoral, or forcing themselves on others.
These topics can threaten to divide thyroid support communities as members articulate their pro or con stances on non-thyroid issues. People will tend to believe that the admins and moderators are taking a stance even if they decide to remain silent or neutral; merely permitting certain posts to remain can imply consent.
Raising anxiety vs. providing thyroid patient support
Anxiety is a common symptom of thyroid hormone dysregulation. These debates and issues often affect us personally and make us more anxious than we already are from our thyroid disease.
Our members may become deeply troubled by any public crisis, but we can help them moderate their anxiety by supporting their thyroid health.
A thyroid patient support group is not one’s personal platform to process anxieties about what’s going on in the public sphere at large. One needs close friends, experts, or counselors to help us process where we stand on a controversy and what we should do.
Public vs private forums
We’ll have deal with any thyroid-related COVID overlap as carefully and delicately as we can, and openly, in the public sphere. I’ve done so recently in a way that raises questions rather than taking a stand, because that’s all I think there’s an evidence base to do in Spring 2020.
We do not have to use our private support forum to discuss a difficult, stressful, contentious, and mostly non-thyroid issue that is more suited to public discussion.
We acknowledge that non-thyroid topics are important for our society to debate, but many will be out of bounds for a thyroid patient support group.
We need moderators to keep our discourse closely related to our shared topic of mutual thyroid support and developing our thyroid knowledge so that our forum does not get crowded out with other topics.
We must be aware of the risks to the entire group when we are clearly under surveillance for our topics and language!
- Avoid hot-button words that are flagged by “bots” (computer programs) that look for health myths and bring them to the attention of Facebook’s fact-checking teams.
Major off-topic controversies to avoid:
- Whether or not COVID-19 public health policies are harmful or helpful to society
- Pro- or anti- vaccination or anywhere in between
- Pro-choice or anti-abortion or anywhere in between
- Vegan or carnivore diets
- Religious beliefs, and their influence on health care, diet, family relationships
- Debates on sexuality, gender identity or feminism
- Debates on Canadian laws and policies, such as the debate on cannabis legalization
- Debates in politics and economics, current elections
Raise your concerns with a moderator if you’re troubled by off-topic posts, especially if they can be divisive.
Do not take offense if a moderator or another member questions the degree to which your post is relevant to the forum’s theme and goals.
If you feel an urgent need to discuss such topics, seek out another forum where they can be the main topic. For example, one can engage in the debate in one’s private Facebook feed, or one can offer to set up a private messenger thread with friends in the thyroid patient group who want to discuss it further “behind the scenes.”
Promotional posts and comments
4. Promotional posts and comments
Some patients may have a business or family interest in selling a particular health product or supplement.
Some posts and comments may be made by covert or open influencers who gain kickbacks or discounts for promoting particular naturopaths or functional medicine doctors, or pharmacies or online stores for promoting their services.
Some members may not really be thyroid patients, or may be both thyroid patients and health professionals or organizational representatives.
Some may be health bloggers or authors who want to draw audiences to their own forums or websites.
Refrain from vigorous promotion of products or services when posting new posts (new discussion threads/topics).
Whenever posting or commenting in a way that might be construed as promotional, openly state that you do not have an affiliation with the business or service. Say what connection you have to it that drew you to comment or post a link in favor of it.
If you see a post or comment that could be construed as promotional, ask the author to disclose their affiliation or any personal gain.
If a member is both a thyroid patient and a health professional, posts should mainly be written from the perspective and authority of a fellow patient and peer. Do not take advantage of a medical role or medical education to dominate a conversation as a thyroid expert, but maintain peer status and humility even if you do have expertise.
It is inappropriate for a medical expert to use a “peer” support group to create a subgroup of followers. Be respectful that our forum is openly affiliated with Thyroid Patients Canada.
If you are also a thyroid blogger or author, consider asking an admin for permission before linking to one of your own blog posts on our forum; it may be welcomed, but consider that you are the guest and TP.CA are the hosts.
Do not post messages on our forum that criticize the limitations or aims of our organization or support group.
Moderators may request members to make their profiles public for verification either at the time of requesting entry or if a question arises regarding their thyroid patient identity and role.
Members may be permitted and encouraged to ask each other questions about a member’s thyroid patient identity and any concurrent roles and affiliations that may influence what they post, their motives for posting, and their status as peers or experts.
Be open-minded to being “moderated” if your messages on the forum might overstep your role and TP.CA’s status as forum host.
Attacks and perceived insults
5. Attacks and perceived insults.
In an international and diverse group, it is often difficult to know which words or attitudes can be offensive or unintentionally cause personal offense. It’s better to be safe than sorry, and yet, unintended misunderstandings and interpersonal conflicts can occur.
Observers may witness a friendly dispute but its language may make it seem like angry bickering.
Participating in a group where some people appear to treat other people unkindly can make it feel like an unsafe place to share sensitive information and struggles.
Realize that our forum has to uphold communication ethics.
Moderators may need to advise against certain types of language use and tone, or certain kinds of wording that can be construed as accusatory or insulting.
On the other hand, we should each try to believe the best of each other and not be too quick to take offense (innocent until proven guilty). Ask for clarification of a person’s meaning and intention if you feel you are being attacked or insulted. Your interpretation of an attack of insult may be due to a poorly communicated message or cultural, emotional and linguistic differences.
Take initiative to seek resolution of misunderstandings between us and other group members. Engage in apologies or explanations if or when needed. Moderators can’t often get into private disputes. Sometimes the resolution of such matters needs to occur behind the scenes in private Facebook messenger threads where there are tools for audio and video communication if necessary to resolve communication challenges.
Those who cannot or will not conform to the forum’s communication standards or who get frequent complaints may need to be removed.
Defamation of character
6. Defamation of character
Sometimes patients can be deeply insulted and even physically harmed by a doctor or a medication and may wish to warn other patients away from them.
Members must also be very careful not to engage in defamation that could be construed as illegal in nature. A fine line exists between freedom of speech based on facts that can be proven, and defamation of a patient or doctor based on claims that can’t be proven.
The criminal law of Canada defines defamation of character as
“matter published, without lawful justification or excuse, that is likely to injure the reputation of any person by exposing him to hatred, contempt or ridicule, or that is designed to insult the person of or concerning whom it is published.”
“In the common-law provinces (all provinces except Québec), truth is an absolute defence. If the defamatory material can be shown to be substantially true, the defendant will not be held liable, even if the defendant published the material in order to harm the person defamed.”
If disputes arise between patients and our doctors, other health professionals, health care systems, or between patients and pharmaceutical companies, we may be helpful to each other in the early phases. Peers and moderators may help a patent discern whether they are serious enough to take action on. Perhaps there may be scientific evidence useful to a case, and links to journal articles could be shared with the patient. If these issues should be taken to authorities beyond the doctor, members can refer their peers to ombudspersons, legal websites, or legal aid resources.
If a dispute is truly legal in nature, our forum is not the place to engage in extended detailed arguments and to provide all the evidence. It is not a law court, and we are neither lawyers nor judges qualified to handle such cases or decide on the guilt or innocence of the parties. Usually one keeps such private information secure in email conversations if they are very specific to a case that may come to court.
If posts include defamatory statements, the comments may need to be edited by those who made them, or entirely removed.
Hijacking a post
6. Hijacking a post
It’s acceptable for comments and replies to occasionally get sidetracked from the person who posted it and their concerns. This is part of a natural conversation in any group.
However, we should discern when a comment and a set of replies on it has become lengthy side-conversation that is somewhat off topic from the original post (OP).
- In some cases, a comment or post needs to engage with the science behind it, and in our group, this is not considered a digression.
- In other cases, it is wiser for a person to start their own separate post, rather than engage in an in-depth or lengthy digression within someone else’s post.
If a commenter on someone else’s post seeks advice on their own symptoms or data, any person can make the suggestion to start a new post.
If a series of replies and comments has gone on at length between 2-3 individuals, it may be time for them to set up their own private messenger thread.
If the original poster feels like the conversation is complete and should be concluded,they have the right to change the settings of their own post (three dots in the upper corner) and “turn off comments” on their own post.
If anyone is annoyed by Facebook notifying them of subsequent activity on a post they’ve commented on, they can choose to use the three dots on the original post to “turn off notifications for this post.”
7. Dogmatic moderators
Some of us have experienced other patient-led thyroid support forums where moderators engage in openly insulting, silencing or blocking members merely for attempting to inform or correct them based on evidence, science, and logical reasoning.
Moderators/admins, as well as experienced thyroid patients versed in the literature, are fallible. They ought to be humble. The evidence-base of what anyone says in the group should be open to respectful correction and questioning.
The content of what moderators and admins post and say in comments should be questioned just like any other post or comment.
Moderators and admins are responsible for guiding and leading the forum’s discourse and upholding standards, but they must hold themselves to the same standards as members regarding respect and compassion for each other, the search for evidence, and critical thinking about evidence.
Moderators ought to model a healthy process of peer-led, respectful, compassionate, collaborative inquiry. We should all value truth, value people, respect diversity, and remain humble and open-minded to correction and further insight.
Members should understand that the reasons for removing someone from a forum may be beyond their own observation. The decisions can be based on behind-the-scenes dialogue with a member and/or other moderator. Some issues may relate to risk assessment, group morale, and the need to stay away from too much in-depth interpersonal conflict resolution.
Respectfully disagreeing with a moderator or admin is not sufficient cause to silence or remove a member from a support group.
Moderators should not be too swift to delete posts and ban people if the situation is not imminently threatening harm or risk.
Upon first offense, always consider that a person might misunderstand and need education. Point them to a policy. Allow people an opportunity to learn and change.
If a member wishes to question decisions that the admins and moderators make about silencing or removing themselves or another member, such concerns should be discussed privately behind the scenes in a Facebook Messenger thread. Taking such discussions off the main group prevents the group morale as a whole from suffering when moderator decision making is questioned. First, the member should approach the individual moderator in question privately. If that does not resolve the member’s concerns, the member can send a private message to the Thyroid Patients Canada’s shared account.
We can overcome.
None of the deep experiential knowledge of our individual and shared experiences will ever be published in peer-reviewed medical journals.
But every day in an active, vibrant support group, we can publish and peer-review our posts, our comments and replies.
Our dialogues are mini-publications. They not only enrich each other’s health, but they become archived in a library of collective experiential knowledge.
The stories and information we share through peer-led patient support can become part of a filter we can use to analyze what we read. Our growing knowledge of diverse patient experiences and thyroid research can become a rich treasure of wisdom.
We are not just building personal knowledge and personal health, we’re building up each other’s lives and building a community.
So let’s build the best “evidence-based” private thyroid patient’s peer-support forum we can.