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

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.

 

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.

 

Gimmick to get more followers? I'm clueless about social media, but I get the impression that some people live for gaining more followers.

 

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.

 

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.

 

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."

 

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

New Approaches to Understanding and Treating Long Covid and ME/CFS (expresshealthcaremgmt.com)

 

It is relieving to hear Dr Bateman’s sensible criticism of this survey, especially as she is and has been a principal investigator of many studies on ME/CFS and long Covid.

 

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.