CBT- Jen Brea Twitter

Only if you happen to lack money. If you have enough money, lots of diagnostics is performed, often helpful and insightful.

I sometimes watch a TV show where people with rare and difficult illnesses are presented. One thing that was conspicuous was the amount of imaging, laboratory and other diagnostics that was performed, often repeated over and over again, furthermore senior physician treatment. In Germany, only persons with a private health insurance get such things. All the others...can watch and die.

I read about two cases of MCAS (in the US). The thing that hit me was the fact that all kind of tests were performed, that the doctors searched long, and that at no point psychological diagnoses were a topic. I can imagine that private doctors can't afford to give psychological diagnoses too often, or else the paying clients might run away.

So what might be universal is the fact that rich people get a good treatment with higher probability. Apart from that, my impression is that the US have better technology.

 

I ponder about that for a while now...

The problem is a little bit like with "psychological diagnoses". Officially (somewhere in the past it seems...), before diagnosing a "psychological disease" all other possible physical causes must be excluded --- before diagnosing ME all other possible causes for the symptoms must be excluded. But that's something that maybe will never end, and it will never be known if all possible pathologies are checked. And I think there are A LOT of possibilities where something can go wrong in the body.

I imagine to have a finite set S of illnesses/pathologies/etc., and today, we know a subset T of this set - these are the known illnesses. Strictly, as I understand the definition, in order to diagnose a "psychological disorder" all the illnesses in set S must have been checked. But we don't know the set S\T - and it's difficult enough to capture T. (Will we ever know if we have found all elements of S?). So how can one check ALL possible pathologies?

How many illnesses should be checked before an ME diagnosis? I have read about Relapsing Polychondritis, channelopathies, periodic paralysis...people that had an ME diagnosis and later a rare disease was found. Or what about gene mutations that lead to illnesses that are still unkown? Or maybe that gene mutations lead to ME?

 

I have been fortunate to have had some limited access to private healthcare. In my own experience in the UK what this means is access to private specialists. The general practitioner who refers you will still be NHS.

I could have had more tests done, but which tests and if they don't make a any difference in terms if treatment is there any point? There are a couple of areas where the consultant and I think an abnormal result would be very likely,but even with an abnormal result we would still treat in the same way. Bear in mind these tests all cost a lot of money and they would all involve appointments and travelling.

If I want my GP or any other NHS docs to take note of these private tests then they would have to go on my NHS record. Now - here's the rub- patients who have been to see multiple specialists and undergone tests, who have not yet had a firm diagnosis or abnormality that could explain it all are usually considered to be suffering from some sort of psychological distress or MUS/FSS.

So, if you are the sort of patient who can afford to go private & persuade your GP to refer you and you actively go off looking for tests and solutions without finding a significant abnormality, then you will almost certainly be regarded as having psychological issues as a root cause of your condition.

Of course, without the tests they consider your issues to be psych anyway.

Damned whatever you do.

 

I think Ampligen is presumed to work by increasing the immune response against pathogens. Since Ampligen stimulates TLR3 and thereby induces the interferon response (normally it is viral dsRNA inside cell that activates TLR3), Ampligen is acting like artificial viral dsRNA, stimulating the intracellular antiviral immunity. So if one subscribes to the viral theory of ME/CFS, the mechanism of action is straightforward.

Ampligen does not appear to be a very effective drug for ME/CF, although it has reasonable results; this study for example found that after 40 weeks of treatment, patients only moved up by an average of 5 points on the Karnofsky scale. Maybe you would move up by an average 10 points or so after a few years of Ampligen treatment; that's not a spectacular result, though it's still reasonable.

And if we assume that say around half the patients did not respond to Ampligen, and we take out these non-responders from the calculations, that would boost the average up to say a 20 point increase for responders only.

For comparison purposes, moving up one level on the ME/CFS scale of: severe – moderate – mild – remission corresponds to 20 points on the Karnofsky scale.

 

What we really need is a disease mechanism, it would help us interpret test results better and suggest what kind of trials should be conducted. One could "prove" an association between belief in aliens and incidence of ME/CFS, but no one in their right mind (and not peddling alternative facts) would accept this kind of research.

This is what i hate about diagnosis by exclusion, there is so much we do not know about the human body and so many tests that are new, not sensitive enough or not known if you don't see the right expert or even not yet invented that you can't exclude everything. This is also a complication not only for designing a good trial but what to trial and properly finding patients. Also some docs won't run tests even for the common diseases because they have already made up their mind that a patient has CFS and should see a shrink. The not properly checking but suggesting therapy angle happens for many diseases besides ME/CFS unfortunately

In the end we need a biomarker that can be tested, so if a doc thinks a patient has ME/CFS it can be proven or disproven easily. Of course few tests are 100% accurate but that does not stop any other disease from gaining legitimacy and legitimate research.

 

The wealthy get better anything, in any given system. And being wealthy does not insulate you from these kind of issues. It decreases the probability, of course - but look at all the patient accounts of this illness all over the internet. Many of them are in the US and insured up to the eyeballs, running all sorts of tests and still not believed by their GP or having any sort of viable treatment model.

 

Spot on! ME/CFS the great equalizer.

 

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
The number of Americans without health insurance rose in first quarter 2017

• 11.3 percent of U.S. adults were without health insurance coverage in the first quarter.
• The uninsured rate is up from 10.9 percent in the third and fourth quarters of last year.
• This still sits below a 2013 peak for uninsured rates for American adults.

Lauren Thomas | @laurenthomasx3
Published 11:59 AM ET Tue, 11 April 2017 Updated 2:05 PM ET Tue, 11 April 2017CNBC.com

 

I don't know of so many very rich people with ME. But you are right in principle.

I think if there were very rich people with ME, we probably had some kind of advovacy from them, like with HIV when VIPs and other "important" persons were affected and they realized there's no treatment or knowledge, and they're gonna die. But probably that's THE difference because ME doesn't necessarily lead to (a swift) death.
I'm probably wrong with that opinion.

Illness is an equalizer as is death, sure - it doesn't care about gender, age, wealth...But treatment isn't. And I guess that a very rich person doesn't get to hear too often "you're psychologically ill, now p*ss off" (there are several reasons for that).

 

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:

• a beta-blocker or ivabradine – which decreases the heart rate
• midodrine – which narrows the blood vessels
• fludrocortisone – which decreases the amount of sodium lost in your urine
• selective serotonin reuptake inhibitors (SSRIs) – a type of antidepressant that can affect how your nervous system works

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.

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.

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.

 

Thank you for coming back @JenB it’s always a bit difficult with this twitter thing ...not enough words etc.

I also get the impression that there are differences between the two systems (although I don’t have direct experience of the alternative)

the NHS is a funny thing culturally ...it commands a strange sense of nationalism and pride that almost surpasses other more obvious things.....when this appears to be criticised it can seem to some a bit like how you would feel if your rather obtuse and grumpy grandmother who doesn’t know how to behave in public gets criticised by a neighbour.

However you are right to challenge how some doctors in the NHS behave because it has a wider reaching influence than just here.

I hope you will have enough time to cast your eye over this petition to remove the GET from the NICE guidelines and help protect the newly diagnosed until hopefully the guidelines are changed in 2020.?

https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now

We could definitely do with your support here...hopefully that wasn’t too cheeky

 

I think this cannot be said loud enough. Yes, we deserve!

 

I have had ME/POTS since the age of 9, but it took 40 years for me to be officially diagnosed by the NHS. I cannot even begin to describe the abuse from NHS staff I have endured during those 4 decades, including 9 months in a mental health facility as a child.

Unusually, I received my POTS diagnosis first, and it was only after I had tried every POTS medication that the NHS has to offer and none had been tolerable, that my GP and POTS consultant agreed that I also have ME. My POTS consultant then dropped me from his clinic when I refused to attend the local CFS clinic for CBT/GET. So, currently I have no doctor monitoring my condition.

Last week, I was taken into hospital with severe abdominal pain. During my stay, I was asked on 4 separate occasions, for various form-filling procedures, about any existing health conditions the hospital should be aware of. I answered, “ME and POTS” (plus I was wearing my medic alert bracelet). I am mostly bed/couch bound, only leaving home for necessary appointments.

I have since seen my notes, obs file, discharge sheets, etc. There was no mention of ME on any of them - not one member of staff felt that it was necessary to put pen to paper to record it. As for POTS, it had been re-named “POTTS disease” which, I believe, is TB of the spine!

Throughout my stay, the nurses (who, I have to say, were all lovely) kept trying to sit me up in bed, despite my insistence that it would make me unwell and I would most likely faint. They would raise the head of the bed until I was almost bolt upright, and then I would lower it as soon as they left. It was such a farce.

At one point, I was talking to one of the nurses and I began to feel unwell from the effort. I explained that I had to stop speaking because I was feeling “POTSy”, and the nurse asked if I needed some toast or something sweet, assuming that my blood sugar must be low.

When I was taken for my CT scan, the porter arrived with a wheelchair. I had to tuck my feet up on the seat and hang my head over the side to remain conscious – other bedridden patients went for their scans on a trolley, but I get the chair.

I wasn’t allowed to drink until after my scan. A cannula had been inserted, but then was not attached to iv fluids. So, I waited all day until late evening without any form of fluids, until I was informed that the scan wouldn’t be until the following day – boy, was I wilting by this point!

In short, my diagnosis of ME was not acknowledged by the NHS staff at any point. As for POTS, they were willing to record that I had it (well, almost), but had no idea what it actually was or how to manage a patient with this condition. I was very much made to feel that my ME/POTS symptoms exhibited at the hospital were of a psychological nature and any peculiar moves that I made to accommodate it were best ignored. There is a world of difference between what the NHS writes on its website and how pwME/POTS are actually perceived by its staff.

 

I totally agree. The problem is bigger then "there is no solution for ME". There isn't, at least not for the hallmark symptom PEM. The bigger problem is people are not getting ANY help at all. Not symptomatically, not even for totally unrelated problems. They are even trying to minimize further investigation into sick people even more, by putting them down as MUS as soon as possible.

There definitely are medications that could help symptomatically, but suddenly when it says ME on your chart, you get nothing.

I see a difference in the US vs. Europe as well. Especially in related problems. For example, POTS and SIBO seem to be pretty normal diagnosis in the US. They are not over here (Netherlands, not UK).
In Europe, it seems it is more normal for a doctor to want just ONE diagnosis and when they can't find it, they just don't treat you at all. In the US, they seem more comfortable with a few diagnosis and giving treatment for every one of your problems.

Sometimes I read here on this forum that we don't know anything about ME and every therapy people are offered is quackery. I get that people want to have real and proper research going on and are cautious to treatments, but I think that kind of message does more harm than good.
There is a lot that can be done. Doctors can start by listening to patients and treating symptomatically (pain, sleep) and treating related problems like IBS/SIBO and POTS.

 

Unfortunately we are heading back to nomansland .
Transfer to adult services meant endocrinologist who knows nothing about ME and did not bother to read 2 papers i sent - the Naviaux metabolomics and the low T3 paper as they connect dots.
My daughter like many has low base cortisol, hydrocortisone has been a bad experience. Steroids may in general be a bad experience as she has reacted to meds that perhaps indicate liver issues.
Solution - i can' t do anything more to help , let me know who to refer you to.......

 

Good to hear from you again @JenB and many thanks for spending the time on your well explained post. Needless to say you are greatly respected here.

 

Roughly 100 million Americans belong to a managed health care plan. Their doctors typically don’t have the time or knowledge to diagnose a complex systemic disease like ME/CFS.

If diagnosed, exercise+therapy+antidepressants is standard treatment. Access to an ME/CFS specialist is virtually nonexistent.