RE: Returning soon, donations also will continue shortly

I can see some of your points. I will need to re red your comment a few times to digest it all. Though I see your concerns I also need to state very clearly that failure to treat is itself malpractice.

Yes there are no cures or even treatments for ME or POTS. However symptoms can be managed. We don't even get the basic of those simple treatments. For example I have had many nerve tests proving I have all kinds of nerve damage. I also always have elevated sed rate and my CRP is also very high. This is "proof" of at least some of my pain. I get zero pain medication. I am also deathly allergic to aspirin so NSAIDS are not an option.

Doctors can treat pain, fatigue ,brain fog and a host of other symptoms. Instead they need me to explain what my illnesses are-they don't even know the basics. They also do not believe me or that I am really as sick as I am.These are not new or even rare conditions.
Untreated pain alone can and has caused death and needless suffering.

It took 30 years for a POTS diagnosis even with very obvious cyanosis from the onset.I was told I was just "cold" and had anxiety. In fact it was often joked about. My ortho hypertention was just "white coat syndrome". Loss of consciousness when upright= just a panic attack. I never once claimed to be anxious or suffer from anxiety in any way. I didn't even notice my racing heart until I was already in syncope most of the time. I got sick at onset of puberty so these things to me seemed "normal".

I recently saw a cardiologists who treats POTS patients. He did not know what ME was (even though somewhere around 20%+ of POTS patients have ME). He said my case was "too complicated" to treat. A POTS specialist said this. So instead of helping me he just referred me to electrophisiology. Knowing I am bed/home bound and not caring that me getting to a doctors appointment costs me over a month of my life (PEM/PESE) with even more suffering from my body's broken physiological response to exertion.

BP was 190/130 when standing for just two minutes. I have orthostatic hypertension which approximately 30% of POTS patients have. I got to try one medication (which didn't work for me at least not at the dose )but he made it very clear he was not taking me on as a patient because he didn't know how to treat me and I was on my own. I have very classic POTS and ME.

I still haven't recovered from that dr visit and that was months ago at this point. I can't keep being tossed from specialist to specialist. I am not well enough to be a ping pong ball .I can't even get doctor's offices to make basic accommodations for me-allowing me to ly down. When I get to the office instead they make me sit up and it causes syncope in the drs office. No one cares ever when this happens. This has happened at every doctor's office for years. The ADA does not apply to us.

Exercise has been proven for decades to cause harm to patients like me (look up 2 day CPET tests in ME/CFS also look into research done in the fucking 70's that proved we as patients aren't faking it). Yet it is the ONLY treatment offered. This is objective evidence that has been repeated for decades proving there are physiological issues upon exertion that we the patients have no control over. Just like a diabetic can't just control their blood sugar with their minds we cannot control the way our bodies handle exertion .we WANT to be active.Our bodies do not allow this.

The cardiologist like all doctors said I needed 180 minutes of intense exercise every week. If I was not a well informed patient this "treatment" if followed can lead to not just episodes of crashing but permanent damage. It is one of the reasons I am so severe now because I did "push through" and exercise when I was not well enough to do so.

This is the equivalent of telling someone with a peanut allergy to eat more peanuts and not give them an epi pen . Yes ME patients have died following these exercise "treatments".

I crashed so hard following that appointment I was vomiting and passing out on the bathroom floor for a few days, (yes I mean this literally)in addition to all my other symptoms. This appointment was especially tough because he basically did a modified NASA lean test and triggered my POTS so he could have a record of it. Necessary I suppose but I am still paying for it months later.

There are some treatments for patients like me. Everything is off label but drs rx off label shit all the time in the US. I would love to try mestinon. It is a cheap medication and I have tried huperzine a (which is a supplement with similar mechanism of action inhibiting the break down of acetyl choline). This has been shown in studies to help both POTS and ME patients.(at least a sub group) I am denied this medication which is approved for MG (lot s of overlap in not just symptoms but lots of POTS/me folks have auto immune antibodies for Ach receptors). I am always denied because doctors see MG as a real disease and still see ME/POTS as psychological manifestations. This is not speculation. i have actually have been told right to my face that "MG is a real disease" as an excuse to not try it.

Yet they rx beta blockers even (which are off label for POTS) when I tell them they make my asthma worse and essentially block my inhaler (not just me this has been proven in studies at least for certain classes of BB). They also do not help my hr when upright.

MG is a rare disease. POTS and ME are not yet I have to explain these illnesses to doctor every fucking time I see a new one. Last CDC estimates shown that ME patients are 1.3% of the population (based on people with an official diagnosis) . This is in spite of most patients not ever receiving a dx.

I was just told to try harder. EVERY doctor every time. Even when I was a fucking athlete in high school (I was more mild then and was making myself sick as I was forced to by my parents). I did karate, fencing, musical theatre had a job at a restaurant and I was still told I needed to just exercise and be more active.

That's when my illness went from"mild "(50% loss of functional capacity with ME is considered mild) to moderate.

I now teeter in the severe/very severe category. I cannot be upright for more than a few minutes without a syncope event. My average pain is a 7-this is not including the pain I am in when PEM/PESE sets in.

There is no excuse to allow the suffering of millions of people and not treat us. There are treatments. There are known protocols and treatment plans developed by experts in the field freely available.

Doctors do not care about us. 30+ years and only one doctor in my entire life took me seriously. I was lucky to get a few appointments in with him before he retired. He is the one who dx my POTS and was the first doctor to ever tell me that my symptoms and illnesses are real.

All of my abnormal tests are ignored. Symptoms that could be treated are not.

Lack of studies/funding is not an excuse. WHO classified ME as a neurological condition in 1969. Despite lack of funding there is a mountain of evidence proving that both POTS and ME are real organic illnesses and not psychological /psychosomatic. This problem is systemic but there are many things health care providers can do to at least address symptom management.

This neglect is a choice. Not believing patients especially female patients and people of color is a choice.