Survey: "TREAT ME" (ME/CFS & Long Covid Treatment Survey), by 'LongCovidPharmD'

Andy

Andy

Senior Member (Voting rights)
From the survey frontpage
  • This survey is intended for those with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Long COVID, and/or COVID vaccine injury.
  • The survey attempts to uncover the most promising medications, supplements and vitamins for treating these conditions.
  • The estimated time to complete this survey may be around 75 minutes, but it could be considerably shorter or slightly longer depending on how many of the surveyed treatments you've taken and how many optional questions you choose to answer.
  • You may stop & resume the survey whenever you wish. Survey Monkey stores a cookie in each respondent's web browser to save progress on a survey. As long as cookies are enabled and stored on your web browser, you may exit the survey at any time with no trouble, including shutting down your computer or restarting your phone. Please avoid using a private browser which will NOT save your answers.
  • Most browsers enable cookies by default, but if you want to double check, answer the first few questions, close your browser, and then return to the survey. If the answers are saved, you should be good to go!
  • Some questions are optional. A question is optional if there is no star * next to the question number.
  • I understand your time & energy are limited. ♥️ You will be notified when you've completed approximately 1/4, 1/2 & 3/4 of the treatments. That way, you may track your progress and easily plan for any breaks needed.
https://www.surveymonkey.com/r/TREATMEANDLC

The survey is the work of "LongCovidPharmD", https://twitter.com/organichemusic.

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I have just been reading some of the recent posts on this person's twitter thread. Seems to be experimenting with a lot of different drugs and supplements for Long Covid in rapid succession which seems pretty silly, as there's not enough time to observe any long term effects for each treatment. And sharing it on Twitter so others are probably following and trying too.
 
So this is a person claiming professional standing: "Doctor of Pharmacy" but is pseudonymous and gives no evidence of their bona fides, while apparently encouraging wide ranging self medication unrelated to any clear differentiation of symptoms, caution of exclusionary diagnoses, or likely side effects ?

The pseudonymous account doesn't give details of their nationality so they may not be bound (if the are indeed a Dr of Pharmacy) by any professional body standards, however the UK Royal Pharmaceutical Society code of conduct is instructive:

• be in good standing professionally, including with the Society and any other professional body or regulator of which they are a member or registrant

• conduct themselves in a manner that upholds and enhances the reputation of the Society

• further the interests of and maintain the dignity and welfare of the Society and the profession

• exercise their professional skills and judgement to the best of their ability, discharge their professional responsibilities with integrity and do all in their power to ensure that their
professional activities do not put the health and safety of others at risk

• when called upon to give a professional opinion, do so with objectivity and reliability

• be truthful and honest in dealings with clients, colleagues, other professionals and all they come into contact with in the course of their duties

• never engage in any activity that will impair the dignity, reputation or welfare of the Society,fellow members or their profession

• never knowingly engage in any corrupt or unethical practice

• not implicate the Society, through direct reference or use of membership status, in any statement that may be construed as defamatory, discriminatory, libellous, offensive,
slanderous, subversive or otherwise damaging to the Society

• if convicted of a criminal or civil offence anywhere in the world inform the Society promptly, and provide such information concerning the conviction as the Institution may require. NBthis does not included Fixed Penalty Notice offences.

• observe the Policies of the Society

• comply with the Society’s Regulations and all applicable laws

--------------------------------------------------------

There are several of those provisions which the account holder might arguably be in breach of.
 
This is what she writes on Substack about herself. Still no professional ID or real name:
Introduction from LongCovidPharmD
From Twitter to Substack

LongCovidPharmD
Nov 18, 2022
7

Dear Readers,

I’m Martha, more commonly known as “LongCovidPharmD” or @organichemusic from Twitter. Please excuse this rushed introduction — I am trying to hurry in case Twitter suddenly goes dark!

For those who don’t know me, I am a pharmacist who is passionate about post-viral, particularly Long Covid and ME/CFS. Until now, I have been writing and analyzing informal surveys on Twitter in an attempt to glean more information on what may help Long Covid and ME sufferers. Ultimately, I would like to extend my reach to those with tickborne illnesses too.

I have also written quite a few reviews of supplements. I plan to upload all my reviews on here from Twitter as soon as possible. Anything new will be published both here and Twitter henceforth.

Many survey results have been shared on Twitter and I plan to upload all data and more HERE soon. I will stay on Twitter, but with the future of that platform looking bleak, I wanted a safe and secure haven for all my writings & work. I will also try to figure out Mastodon (I’m on Med Mastodon now under LongCovidPharmD).

New surveys underway to be posted in coming weeks:
ME/CFS supplements/prescription medications

(Long) COVID Prevention Survey (nasal sprays, probiotics, antivirals, vaccines, etc)

Non-pharmacological Treatments for Long Covid and ME/CFS: a more detailed survey going into what symptoms are relieved with craniosacral therapy, HBOT, Vagal Nerve stimulators, and others

Anticoagulant/Anti-Platelet Survey for Long Covid

Anticoagulant/Anti-Platelet Survey for ME/CFS

If you would like to be emailed whenever I post a new survey, survey results or various supplement/medication reviews, please subscribe.

Thank you to ALL who have followed me on Twitter — those who have reached out, those who have answered polls & surveys, and those who have quietly read. Thank you all! I hope we can continue to keep pressing on and figuring out new ways to treat Long Covid and ME.

In solidarity,

LongCovidPharmD (Martha)
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https://pharmd.substack.com/p/introducation-from-longcovidpharmd
 
I only did the first few questions about ME/covid. Not the clearest & I couldn’t face trying to understand how to respond to multiple questions so abandoned.

I am not making this criticism to be awkward, I had experience in my job of commissioning quantitative and qualitative staff and customer surveys, I know what a good questionnaire looks like.
 
I've just done the whole thing in one go, as my input was minimal. For most sections on treatments I simply ticked 'none of the above' and moved on. There were about half a dozen that I have taken, usually for some other reason, which I did include and answer questions about, but again, it was mostly to say they had no effect on my ME.

The number and range of treatments people are experimenting with is mind boggling.

One thing I've just realised was missing from the options for the effects of each treatment.
The options were something like - positive, fairly positive, positive but side effects, no effect.
There was no option for wholly negative effects. Surely not, have I remembered that correctly?

There was a chance to write a comment at the end. This is what I wrote:
I am concerned that this is encouraging people to think it's normal or even a good thing to experiment with medications and supplements for which there is no evidence and which may cause harm. Is this ethical? Also I think the person carrying out this research should be identified by their real name and affiliations, not hiding behind a pseudonym. That is surely unethical too.
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Given that the person running this survey says she is a pharmacist, it's quite likely she works for a pharmacy or pharmaceutical company that sells these medicines. In which case there's a big conflict of interest in running a survey like this and it is effectively market research, especially if she's going to publish the results and use them for advertising. The more I think about this, the worse it seems. She needs to be more honest.
 
Damn this thread is really devolving into conspiracies. Sometimes it's just someone doing work that isn't being done. This account has been running similar polls for a while, never pushes for any particular medication, definitely does not recommend a particular drug or brand of drug other than highlighting survey results.

I have seen nothing but someone asking the patient community out there to figure out what they use and what works. This is basically how it's done when official, except it's not even happening. If IRB approval is what you demand of this, yikes. We've seen what gets officially approved, and it sucks giant balls.

Whether those surveys are any useful is up to debate, but by the standards of most research in chronic illness it's definitely above average, and that's an indictment of the average. The range and variety of treatments people are using is only a natural reflection of systemic neglect leaving people in despair, medicine is responsible for this by their negligence. When the experts are refusing to do their job, people don't quit experimenting. Might as well get some information out of it while most experts aren't even trying.
 
You are probably right that this is a well intentioned attempt to collect information. I don't think I'm suggesting conspiracies. Just putting my concerns about the role of a professional pharmacist in publicising anecdotal data in a way that may encourage unwise experimentation. She's already publishing some early results on twitter.
 
She says she is a Doctor of Pharmacy and tweets are not medical advice (but she is not likely to be a medical doctor as one would state your fellowship/highest qualification etc) so I don’t think that is very professional….but that is Twitter…

I wonder if she has degree in the profession of pharmacy and then gone on to do her PHD (so research into therapeutics, medications, the pharmaceutical industry, anything I suppose). Google image search negative, not a surprise.
 
It's not appealing to conspiracy to ask that a professional abide by the standards set by their fellow professionals, as set out above, notably:

"exercise their professional skills and judgement to the best of their ability, discharge their professional responsibilities with integrity and do all in their power to ensure that their
professional activities do not put the health and safety of others at risk"

Making a claim of professional standing when publishing anything is adding authority, in this case to the results of polls which are merely an argumentum ad populum . At the very minimum anyone claiming authority which may impact the health and safety of others should do so without the cover of anonymity and with a clear statement of their bona fides if those bona fides aren't readily available for public view e.g medical register.

The remedy in this particular case is that the account holder either remove the claim of qualification or add a verifiable real world identity. That wont change the nonsense of appeal to numbers but would either remove unwarranted authority or provide transparency.
 
Trish said:
The number and range of treatments people are experimenting with is mind boggling.
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ME is a vast experiment in treatments--each of us trying whatever catches our attention, plus all those foods, ingredients, and other possible treatments (electric pulses, various magical items, grounding, etc)--yet we still don't have any reported treatment that works reliably for a significant number of people. Is the survey limited to commercial products or treatments based on theories about what causes symptoms? My best successes have been from accidental discoveries that I still have no supporting theory for.

Even if the survey was done professionally, I think the results would have little effect on the number of people actually helped by trying the treatments with more positive numbers.
 
"#TREATME Update: 1. Over 3,600 responses! 2. This Tuesday I zoom with experts involved in complex chronic illness research & machine learning to review survey & discuss plans for analysis! 3. Due to requests, I'm keeping the survey open an extra two days thru Tuesday."

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Andy said:
"#TREATME Update: 1. Over 3,600 responses! 2. This Tuesday I zoom with experts involved in complex chronic illness research & machine learning to review survey & discuss plans for analysis! 3. Due to requests, I'm keeping the survey open an extra two days thru Tuesday."
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Is there still no idea who this is? I guess it’s too much for us to ask what experts will be on this zoom
 
Merged
In January 2020, Martha Eckey, a pharmacist in Champaign, Illinois, fell ill with symptoms including a sore throat, cough, and stiff neck. Though Covid tests were unavailable at the time, she later discovered that she had tested positive for influenza. Eckey experienced severe fatigue that persisted for years, leaving her unable to fully recover. After learning about the lingering symptoms associated with post-Covid conditions and connecting with other patients, Eckey suspected she might have developed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a long-lasting illness that can occur after a viral infection.

The challenge for patients like Eckey is that many healthcare professionals are not adequately educated about post-viral illnesses. Despite the fact that millions of Americans live with ME/CFS and up to 65 million people worldwide may have long Covid, these conditions are complex and difficult to define and diagnose due to the wide range of symptoms that affect different body systems. In a recent analysis of long Covid patients, researchers found that symptoms often overlap with those of ME/CFS and other conditions.

Research into the biological markers of these conditions is ongoing, but currently, there are no approved treatments for long Covid or ME/CFS. Desperate for relief, patients have turned to a variety of unproven and often expensive treatments, ranging from microbiome therapies to vitamin supplements to experimental techniques such as “blood washing.”

Martha Eckey, also known as LongCovidPharmD, recognized the need for more information and launched a grassroots effort to gather data from patients. Using surveys shared on social media, Eckey collected information on medications and supplements that patients had tried and their effects on symptoms and quality of life. The surveys revealed patterns and trends in what seemed to be helpful for patients, providing valuable insights for future trials and research.

While grassroots efforts like Eckey’s surveys have limitations, they can still contribute to our understanding of these conditions and guide further study. Large clinical trials are costly and can only test a limited number of interventions at once, making crowdsourced knowledge an important source of information. Eckey’s work has gained recognition and support from organizations like the Open Medicine Foundation, which aims to diagnose and treat complex multi-system illnesses.

In the quest to find effective treatments for long Covid and ME/CFS, the efforts of individuals like Martha Eckey, who are actively engaging with patients and gathering real-world data, are proving to be a valuable asset in the fight against these debilitating conditions.
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New Approaches to Understanding and Treating Long Covid and ME/CFS (expresshealthcaremgmt.com)
 
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The above short article uses as its source a much longer article on Undark.
From a Grassroots Survey to Long Covid Treatment Trials
It includes this from Lucinda Bateman:
DESPITE THE POTENTIAL, surveys have unavoidable, inherent biases that can influence how data is collected and results are interpreted, said internist Lucinda Bateman, founder of the nonprofit Bateman Horne Center — a clinical care, research, and educational organization in Salt Lake City, Utah, that focuses on chronic, complex disorders including long Covid. First, there’s selection bias: Who decides to participate and why? There’s sampling bias: Who never hears about it? There’s also non-response bias: People for whom a treatment has little to no obvious effect may be less likely to participate.

Surveys also hinge on participants’ own accounts, which aren’t typically confirmed with other sourcing. Eckey’s survey, for instance, relied on respondents to indicate whether they had an official or presumed diagnosis of long Covid or ME/CFS.

The approach also can’t typically account for the placebo effects that result from other factors besides a specific treatment or from other ongoing illnesses or treatments, which may skew the results. And beyond the difficulties with diagnosing long Covid, people may “think they got sick during the pandemic, and it’s entirely something else,” said Bateman. The uncertainty in the data is “just what happens when you do surveys,” she added.
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Martha Eckey, also known as LongCovidPharmD, recognized the need for more information and launched a grassroots effort to gather data from patients. Using surveys shared on social media, Eckey collected information on medications and supplements that patients had tried and their effects on symptoms and quality of life. The surveys revealed patterns and trends in what seemed to be helpful for patients, providing valuable insights for future trials and research.
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I think this is a very helpful approach, given that it aims a starting point rather than provide definitive

Also, it would be interesting to see the comparison between survey results for different proposed treatments. It’s likely that the biases would be similar when the same person is conducting the same survey, presumably reaching the same network each time

So if one treatment appears much more successful than another, despite having similar biases, that becomes particularly interested.

of course, the same is true of surveys of ME and psychosocial treatments.

Again, the fact that graded exercise comes out so much worse than CBT is interesting, and I think tells us something. Likewise, the comparison between both graded exercise and CBT with pacing.

But the actual success/harm rates of different treatments can’t be accurately gauged from such surveys.

Equally, they can’t be gauged from the service run by fatigue clinics, given that only a minority of patients participate, and even that sample is biased in its selection.
 
Having watched some of the discussion around this pharmacist's efforts to collect information on Twitter, I share Lucinda Bateman's doubts about its usefulness in finding treatments worth researching.

It was noticeable how much people on Twitter were egging each other on to try the latest fad, and many of them were trying large numbers of different supplements, herbs, drugs, mind/body stuff and physical treatments all overlapping or together. It seemed quite common for people to post long lists of everything they were trying with more added each week. There's no way among all that they can tell what if anything is helping.

It may be a bit useful if nobody claims any benefit from a specific treatment that a large number have tried, or if significant numbers say they got sicker while taking it. Then that might be a useful indication not to waste money trialling that treatment. But I don't think the reverse is valid, especially if it's a treatment profitable for proponents, like LP etc., or some particular patented concoction. They would ensure they push their supporters to participate in the survey to skew the result.

I think large surveys about help or harm from treatments that are administered by health services on the other hand can provide valuable information of the potential for that treatment to cause harm, which is what has been shown for GET.
 
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