Hi all. I stumbled on a link, that brought me back to this forum, that brought me back here. Thank you for the welcome!
Again, sorry to have caused so much distress. That was never my intention, nor did I imagine that would be the outcome.
I just wanted to stress that many of the drug treatments I mentioned
are the standard of care for the diagnoses they are approved for. There is no reason that ME patients with these diagnoses should not have access to them. There were subsequent comments to my post re-stating that there's no evidence for these treatments in ME but again, there is evidence for these treatments in other conditions that significant subsets of us would be diagnosed with given sufficient testing, POTS chief among them. For example, every ME patient with POTS should have access to the standard of care for POTS,
https://www.nhs.uk/conditions/postural-tachycardia-syndrome/ which already allows for off-label treatments with the following medications:
Medication
There's currently no medication licensed for the treatment of PoTS, but your specialist might suggest trying a medication "off label", such as:
If a medicine is used "off label", it means it hasn't undergone
clinical trials for this use, but many experts believe it's likely to be effective and your doctor will discuss the possible benefits and risks with you.
In practice, however, the majority of patients with ME I speak to haven't been assessed for POTS, much less trialled these treatments. And to say that there's no evidence in ME is to forget what we already know about how to diagnose and treat other conditions.
It's too easy for patients to believe in treatments based on hearsay. I have a flattened pituitary as well and as far as I know this isn't uncommon and doesn't necessarily produce any symptoms. Yet someone could mistakenly think that this represents a meaningful structural brain abnormality. Let's not underestimate the difficulty of the problem we are trying to solve. There are not yet any easy answers. Doctors can probably do more for us patients than they think but probably also not as much as patients would like. I feel it's important to lay the foundations for solving the problem, which involves political recognition, adequate funding and good research.
We patients also need to demonstrate that we can do a better job than the CBT/GET crowd and similar.
Empty sella is a common finding and it is usually asymptomatic but is strongly suggestive of intracranial hypertension if you have the symptoms of intracranial hypertension. That's written on pretty much every mainstream medical website about empty sella/IIH (and that is exactly what I said on Twitter by the way – on its own it usually means nothing; in the presence of other signs and symptoms, it is significant.). In addition to the empty sella, I have excess cerebrospinal fluid behind my eyes, which suggests the empty sella is due to excess cerebrospinal fluid flattening the pituitary – in other words, high pressure. This should have been investigated in 2011 when I had my first MRI, especially as I was constantly complaining of headache, pressure in my head and behind my eyes, and stiffness of my neck and spinal cord.
That is all I was saying. Not that my neurosurgeon stumbled upon the cause of ME or that every ME patient has idiopathic intracranial hypertension (IIH), or even that I have it (my follow-up testing revealed signs of several vascular abnormalities, but I am still pursuing further testing to confirm).
Rather, that we all deserve access to better testing and to the treatments that already exist for the symptoms and comorbidities we have. I'm not making any generalizable scientific claims re: ME based on my n=1 case or the cases of other patients who had missed diagnoses, such as some of those discussed in the Ian Carroll and Peter Rowe's talks I posted. But everything I did say rests on either solid science or accepted clinical practice (in diagnoses other than ME, but which, like POTS, are probably frequently comorbid with ME).
I still remember my infectious disease doctor telling me fairly early on that I met the diagnostic criteria for "chronic fatigue syndrome" but that she didn't want to give me the diagnosis because once it was on my chart "people would stop thinking." Looking back at my MRI and what *could* be on the other side of this investigation, I now know understand differently what she was saying.
Anyway, none of my querying in my brain imaging implies a treatment – yet. And all of the drug treatments I mention out loud have solid science or clinical practice
in the applications and for the diagnoses for which they are prescribed.
It’s very worrying that Jen has set herself up as a spokesperson when she knows so little. Besides not fully understanding the history of the illness (and is therefore likely to repeat any mistakes or waste time and effort reinventing the wheel, she seems to think she knows a lot about UK health and care matters. Yet she clearly doesn’t even understand what’s happening in America. She seems to be unaware of the reality of life without insurance cover for many of the poorest Americans. She talks as though people in USA get good healthcare, yet many do not. An estimated 27 million + Americans do not have health insurance
I never said that everyone with ME in the US has access to healthcare! A lot of people have no insurance or have highly restrictive insurance that will prevent them from accessing the specialists that might order these tests and treatments. I'm very lucky to have good insurance because my husband works for a large institution (a university). However,
I didn't have health insurance my entire life until I went to college, didn't have health insurance for much of my twenties, and while I did have insurance when I was in graduate school (when I got sick), it made not one difference for the ultimate outcome of my diagnosis and treatment experience the first many years. I found no help, was diagnosed with conversion disorder, and was bedridden with no home care and no way to travel to a doctor to establish care for quite some time. What I was trying to say (and again, Twitter) was that I think more people in the US have access to testing and treatment options than people living in the UK owing to the greater regulatory freedom doctors here in the US have. But more certainly doesn't mean most, not even close, and I have spoken over and over again in many fora re: the issues of access to care, which are pervasive everywhere.
After talking to many, many patients in the UK, I did come away with the impression that the majority of people I spoke to were living with their ME entirely untreated, whereas in the US, the majority of patients who were diagnosed and connected to the online community had tried at least one major drug treatment. Granted, that's a privileged set (internet access, diagnosis, education, often either proximity to care or the funds/health to travel for it, friends or family to chip in) but most were not wealthy by any definition, and no different in terms of background from many of the folks I met in the UK. I know several people from the UK who have traveled to the US for care, either because they were wealthy, or because they crowdfunded, or because they had family support. I know no one who has done the reverse. These are all just anecdotes, and without actually attempting to measure and analyze the problem, there's no way to know if my impressions are correct. But the legal, policy, and institutional environments are different, and that's bound to result in differential outcomes for care, in ways both good and bad.
My passion for this is that I have access to four drugs, paid for by my insurance for as long as I have it (and God help me the day that I don't – I don't think this will last forever), that completely changed my life, taking me from a severely ill, bedridden patient, losing the ability to properly pee or eat, to someone who still lives a highly modified life, but is nonetheless now "moderate." What helped me will not help everyone, but it will help some, and I think everyone deserves that chance, irrespective of insurance, access or geography. I am angry for my friends in the UK who don't have the option of trying any of the drugs that helped me or accessing real specialist care.
Again, my argument is not that any of these drugs immediately be put into official guidelines in the US, the UK, or anywhere. Rather, we have many, many, many strong drug candidates for clinical trials. We should be demanding those trials, with large enough sample sizes to begin to understand which drugs work, for which people, for what reasons. If we can do that, then many, many more people will have access. And we should also be demanding the basic science to get to mechanisms, biomarkers, and one day a novel drug approved specifically for this disease.
