Some of the PsA Advice Scares Me!

General
1

Dear Members of PsA Online Support,

Although people may have good intentions, only doctors or other licensed health care professionals (ARNP, Pharm D, RN with superv. of MD) should be giving medical advice to patients. I don't know any health care professionals who would give medical advice over the internet.

Health care professionals need to have the patient's medical chart, medical history, list(s) of current and past medications in writing and in the patient's medical chart, and the patient's signature on legal documents in the chart.

Health care professionals must have a university education, serve an internship, MD doctors must serve a residency, ie have experience in a hospital treating patients, and by law, must be licensed to practice in their field of expertise.

Please, Members of PsA Online Support, your "good intention" medical advice may cause harm to someone!

Signed "Angellee", MPH (Master's Degree in Public Health, Health Education).

PS. Best wishes and thank you for taking the time to read my message.

2

On my part, im not giving advice. Im sharing my pain wih others just like me. Thanks to this site, i know im not alone. I have lived with this so long. Its such a relief to know someone else feels just like i do. Dont take that away from me. Took me a long time to find this. Its very sPecial to me.

3

Angellee, some of us have been on here for quite a while and know quite well the spirit in which the advice was given and we also know what an amazing resource the person in question is. I can assure you, that person has helped me out a bunch of times. The person in question doesn't pretend to be a medical doctor but the advice given is from a ton of reading and experience.

I'm in agreement with Shanon on this. It's good to have other peoples' advice as long as they aren't claiming to be doctors.

4

I totally agree with you Shanon, this place has been a God send to my sanity. I have not personally seen where any here try to offer medical advice. In fact I have often seen where people were advised to call their doctor. People are often told that everyone one of us here although very similar is very different & therefore reacts differently. Suggestions are often made when someone seeks advice or opinions. That is after all why some of us are here.

Shanon Porter said:

On my part, im not giving advice. Im sharing my pain wih others just like me. Thanks to this site, i know im not alone. I have lived with this so long. Its such a relief to know someone else feels just like i do. Dont take that away from me. Took me a long time to find this. Its very sPecial to me.
5

Wow, I understand the whole point of this, but I DO NOT quite agree with it. Yes, my rheumy was the one to diagnose me and put me on meds, however that's all he's done. I have had so many different side effects pop up and my doc doesn't care. That's why this group is amazing. You can write a quick blog asking about something, see if anyone has had the same problem, and possibly get some good advice from them. As far as I'm concerned, this group and it's advice has done more for me than my doc EVER will. Also, most of us are grown adults and can make wise, informed decisions for ourselves. Seems like you aren't giving us the intelligent credit we deserve. We all have enough going on with our diseases, we don't need someone saying something like this. Personally, I am offended. Thanks.

6

I agree with all the above replies. This is a support community, one for which I am grateful to have. I have asked for personal experiences because it helps me become more educated about the disease. It helps me be more informed so when I see my doctor I am armed with the most pertinent questions and concerns. I have to say I am surprised that you thought we were dispensing medical advice when in fact we were offing support and sharing personal experience of a disease that we unfortunately share. It felt like we were being lectured and I am sure that was not your intention.

7

We are just trying to be advocates for those of us with the disease and since many doctors can only tell us what has been proven in studies, we are trying to find connections and know that what we are experiencing is not 'wrong' or 'in our heads'. I have given advice on here but not about what to take or anything like that, I just share my experience and what I have done to be an advocate for my own health and tried to help others who are confused by the diagnosis and feel helpless about helping themselves.

8

Really? I always take the advice of the health care professional, but listening to people on this site have helped me to ask better questions when I get to the doctor's office. Their good intentions have transferred to better healthcare for us.

9

You do realize you can't get a prescription for anything from an online support ( well except for phony viagra from China) but have to ask your doctor for it right? As far as supplements, diets, heating pads, stretching, alternatives, exercise etc. you don't need a Doctors advice right? In fact most will say if it works whos to knock it.

And the post that set you off was pointing out the well established (and published) protocol of PsA treatment also pointed out that changing doctors can severly delay getting treatment and/or losing a Dx which is very hard to come by. Some folks on these boards have spent years trying to get a Dx,

Also a vocational masters degree to advise teenagers to use condoms and fat people to lose weight is no substitute of shared experiences of people suffering years with a disease. I think it was in Tommy Boy where it was said if you want a good T-bone you don't need to shove your head up the a** of a cow, you ask the butcher.

And then I shall apologize, I don't often get mad, but I have been fuming for 4 days.

Thank You,

TnT Lamb (and FWIW - MBa, PhD (Research metrics,) PsA sufferer 40+ years)

10

Angellee,

I can understand, given that you view things through your professional lens, that you are sensitive to the kind of advice being given here. However, we are all grown-ups, and we recognize that what is being said reflects peoples' experiences and opinion, and does not generally constitute medical advice as such . And, as Lamb said, we still have to go to doctors for our scripts. By far the majority of posts here which talk about medications and treatments also advocate (implicitly or explicitly) the involvement of a qualified medical practitioner. Many of us have had a dreadful time getting the right treatment, or even the right diagnosis for this disease, and many of us have found the keys to success right here.

You say that "I don't know any health care professionals who would give medical advice over the internet." You may not know any, but apparently there are some. Check out health.justanswer.com . I consider what goes on there to be far more dangerous than what happens on a board such as this one.

All that being said, I too have my uncomfortable moments here. My beef is with people who cut and paste from authoritative sources without citation -- that's dishonest, and makes the poster sound like they are more of an expert than they are. That doesn't happen often, though.

I notice that you were not specific in identifying any post or posts which disturbed you. Perhaps, in future, you could comment on these directly so that whatever advice which you believe to be dangerous could be clarified on the spot.

Seenie

11

tntlamb,

Everything I've read of yours had been dead on with things I've read, been told my doctors, or learned about in the NPF webcasts. I think you're an incredibly valuable resource to this community.

--Andrew --- since we're listing letters... (Ph.D. in physics, MBA, ASA (associate of the society of actuaries).

Hmm that was fun, I just go the ASA, so I've never been able to list it before!



tntlamb said:

You do realize you can't get a prescription for anything from an online support ( well except for phony viagra from China) but have to ask your doctor for it right? As far as supplements, diets, heating pads, stretching, alternatives, exercise etc. you don't need a Doctors advice right? In fact most will say if it works whos to knock it.

And the post that set you off was pointing out the well established (and published) protocol of PsA treatment also pointed out that changing doctors can severly delay getting treatment and/or losing a Dx which is very hard to come by. Some folks on these boards have spent years trying to get a Dx,

Also a vocational masters degree to advise teenagers to use condoms and fat people to lose weight is no substitute of shared experiences of people suffering years with a disease. I think it was in Tommy Boy where it was said if you want a good T-bone you don't need to shove your head up the a** of a cow, you ask the butcher.

And then I shall apologize, I don't often get mad, but I have been fuming for 4 days.

Thank You,

TnT Lamb (and FWIW - MBa, PhD (Research metrics,) PsA sufferer 40+ years)

12

I would have to say that I don't think ANYONE here is trying to give out medical advice, rather they are trying to share with others their knowledge of this disease with others. I have found many people on this board to be exceptional (lamb you are definitely one, many thanks for that) in sharing their knowledge and also in directing us to other research reports or web sites which may be useful to us. We need to make sure that we, as the ones who are stuck with this disease, we find out as much as we can about it, as even though we may go to specialists, etc., alot of them will not give you a whole lot of time, or explanation about your illness, or other related conditions...some of them simply write a scrip (and then some of them don't even do that!).

I am quite certain that nobody on here is trying to "play physician" and give out medical advice and I am equally as certain that no one, in their right mind, would take the advice of an anonymous person on a chat board as "actual medical advice" if it were something that would/could harm them. Most people are intelligent enough to figure that out for themselves.

Please don't stop with the great advice people, just because one person seems to be offended by it. Many posts can be taken out of context or misinterpreted...(I have done this myself before), I think this is what has likely happened with Angellee.

Be better,

Dani

13

I am sorry but I do not understand the purpose of citing your educational credentials to criticize the activities of the community at large based upon some unspecified fears (argumentum ad verecundiam).

To my knowledge, no one in this community is claiming to be medical professionals. I do not expect that anyone here foregoes direct medical treatment on the basis of some post they may have read here.

I have found the experience, advice, & fellowship of this community to be invaluable. In fact, it was critical to my getting diagnosed.

Your assertion that no healthcare professional would offer online advice is simply not true. There are numerous sites such as the Mayo Clinic, the National Institute of Health, the Center for Disease Control, & WebMD, to name a few, that are authored by health care professionals. In fact, there are numerous resourses from medical professionals & patient communities alike. I have even read online advice from individual medical practices.

No one should ever rely on the professional opinion of a single health care practitioner no matter what their apparent education or qualifications. It is essential to educate oneself. It is essential to seek multiple sources of information. No one knows this disease better than those who live with it day in and day out. Patient pespective & experience is a very valid & essential component in battling this illness.

Further, ‘crowd sourcing’ is proven highly effective in problem solving to include medical diagnoses, especially in cases of rare diseases or less common symptoms.

There have been numerous posts where a patient has had the misfortune to encounter a less than competent doctor. The advice is always to find another doctor but to do so armed with the benefit of the experience of those who have walked the path before you.

I do not agree with everything I read here but truly welcome the dialog. As in all things in life, critical thinking & an open mind are essential to arriving at a consensus or a solution.

I find your blanket condemnations to be over reaching. A general attempt to illicit fear is not very constructive.

If you have specific concerns about particular posts I welcome you to respond in the context of those discussions. I am sure the community can benefit from your insights.

14

I find all of the advice, experiences, and information here to have been one of the most valuable sources of information available, but that doesn’t mean I would assume its correct, or blindly take it on without doing my own research. I have confidence in the other users of this forum that they too would be smart enough to do this.

For me, this forum, and the supportive people on it, have been instrumental in preventing the sort of isolation that can rapidly lead to severe depression and anxiety, particularly in combination with a disease like this that takes away so much of life’s joys when you have small children and a blossoming career.

You may have had good doctors, but my Rhuemy is pretty average. Many others on here have had experiences with doctors who were either downright incompetent or borderline negligent. It happens, they are human too. They also don’t have quite the same motivation as we do in researching the disease.

If you stay here for any length of time, you’ll also see that the forum moderates itself (with the help of formal moderators) pretty well - anything unsubstantiated or that looks dubious gets called to account pretty quickly.

I’m here because I want people’s advice, medical or otherwise. I’m fully aware that their information relates to their experience, not mine, but would like to think I have the capacity to apply others learnings to my own situation in an apprpriate way.

I learnt that from life though, not from my Masters in Engineering.

15

I think we are having fun with the degrees… Hope my sarcasm wasn’t missed.

16

Oh yes Lamb, not missed :), the irony is that PsA would have to be the best leveller ever!

17

I can’t add any more to what has been said but I’m going to anyway.

Unless you have PsAyou haven’t idea what it feels like and this support group is great because it gives an outlet to share experiences with other PsA sufferers. My rheumatologist is great but she cannot appreciate what it is like to have a flare up, have 2 small children and a full time job and still cope with the pain and fatigue. This forum is great for support.

What do I know though, I only have a degree in engineering and am a chartered accountant, not a health professional :wink:

18

Life is weird Gwenneth. Watched a TV program with my granddaughter yesterday. They found 4 bakers from GB to have a cupcake bake off (Its called Cupcake wars) for the privlege of having a dsiplay of 1000 cupcakes ate th British embassy celebrating the Queens Jubilee. All I could think of Gwynneth eating chocolate something elses - fairy cakes? during a flair, in any event theye weren't called cupcakes (what are they called)

There was a survey done a while back about theses communities, as you know Bens friends supports ove 30 rare diseases with boards like this. No surprise 72% said it is the support, understanding and connectivity that they most appreciate.

38% of the respondents say that the boards provide the information they need to cope, respond to and share with their healthcare providers.

19

TNT - I call them buns but I am from Yorkshire (north of England). Southeners call them fairy cakes. Good job we all speak the same language :wink:

20

Andrew,

I agree, TNT Lamb is always dead on and well researched, and his advice is invaluable to me. When you get an answer from him, you're darned glad you did.