The Washington Post: My hope vs. myalgic encephalomyelitis, a chronic neuroimmuno illness

I agree @Invisible Woman

Admitting they don't know shouldn't dismiss the fact that their patient is ill/disabled and needs support even though the prognosis is unknown.

 

I think an experienced doc may have some idea but there are never any guarantees.

The unknown prognosis also just leaves someone in a limbo of uncertainty. There will be some who would cope better with the knowledge of a poor prognosis than just being left with a great unknown.

Leaving it hanging as an unknown also leaves the patient prey to treatment vultures peddling all sorts and blaming themselves when they don't get better. Especially when they read articles about people who suddenly, magically did when they sniffed a blue crystal by the light of a silvery moon.

The uncertainty is, I believe, part of the unholy mess made by the BPS cabal. Whether it was unintentional or not, there is no follow up and tracking of patients. CFS clinics don't seem to bother. They see patients in the first couple of years of diagnosis when they are most likely to spontaneously recover from PVFS & only for a brief window in time.

If you were diagnosed with MS or some other long term disorder you would have a much better idea of prognosis. There will always be some variability in how fast and far individuals might deteriorate.

The unknown prognosis here in the UK is also seen as a bit of a shirker's charter. If a doc puts that on your notes you can guarantee the DWP and everyone else will be hounding you regularly to see if you've recovered yet.

Edit typo

 

Also in some work pension schemes people are only eligible for ill health retirement when they get formal confirmation that they will never recover enough to be able to work again. I was pleased at the time to have a neurologist who said I would never be well enough to work again, as this was my only option if I was to be able to afford remaining in my own home.

However at the time I did not really believe it, but I thought I could delay any potential complications till the time I got better, though it probably meant even then returning to my profession full time would not be an option. It took a number of years, several costly failed attempts at part time self employed work and a worsening of my condition to accept the neurologist’s prognosis was accurate.

 

This is where patient support is so important, as important as a truthful & preferably sensitive prognosis.

Some might fall into despair.

Some might be experience denial.

Many will vacillate between the two.

Decent support would help patients cope and, hopefully, minimize any damage done when trying to push through.

 

In terms my own experience false optimism, often supported by clinicians most especially in my contact with a specialist ME/CFS service, has been more harmful than realistic pessimism, both in terms of health outcomes and finances.

 

It seems to me we can't on the one hand say "we don't know" what the prognosis is, and on the other publicly argue that this disease takes away our lives and causes us to be among the millions missing. The fact that this goes on for years, and that people seldom recover, is a key argument in our public advocacy.

 

I too needed a clear statement that I would not recover in the forseeable future in order to get ill-health retirement.

I was diagnosed by Prof Lindsay who had, I think, an excellent approach to me. He explained that he thought ME was pretty much for life, but with appropriate measures and changes in lifestyle, you could have a real life. He gave an example of a patient who used to work in the city. After getting ME he retired, moved to Norfolk, and took up breeding roses. He thought that he was cured, whereas, Prof Linsay suggested, had he moved back to London and taken up his old job, the extra demands would have brought back all the symptoms.

 

That is the loveliest thing I’ve read all day!

 

I ought to add though that I was and am on the mild/moderate side. That makes a massive difference. I don't know how he would have handled it if I had been more severely affected.

 

From the article:

This is unbelievable, though a better word might be "reprehensible."

For someone to tell a patient who was still in the first year of ME/CFS that they will never work again is unconscionable.

Remember, this happened "thirty years ago," so it would have been in 1991, when the CDC knew virtually nothing about "chronic fatigue syndrome," was spending as little money as possible to find out more and was estimating that there were only 3 or 4 thousand cases in all of the United States.

It's so heinous that I wonder if the doctor might have been attempting "reverse psychology," hoping the patient would rise from her wheelchair, point a finger in his face and shout "I'll show you!"

But I don't give the doctor that much credit.


I remember when a doctor we'd never seen before came into my mother's hospital room and declared that she only had 3 months to live. She had liver cancer and I guess this guy had looked at her x-rays. We immediately went to another hospital and saw a specialist who was on the cutting edge of new treatments. My mom lived three and half more years and was there for the birth of her first grandchild.

One thing I've learned over the years is that you never let anyone take your hope away from you.

In the film Lawrence of Arabia, when one of his men has been left behind on the burning desert, Lawrence is told not to go after him because "it has been written" that the man should die. When Lawrence later returns with the man, and both are half dead, his first parched words to the others are, "Nothing is written."

 

Thirty years ago in Canada, I was told that there were no treatments available, and that we just don't know who will recover and who won't. That's the truth, even today.

 

ME, as opposed to a time limited post viral, is permanent and it is vital for newly diagnosed patients to know that for the simple reason that it can be managed.

If you have ME your best chance of not deteriorating is to keep within your energy limits. Too many people have thought they were cured and stop watching what they were doing so they end up severe and bedridden.

There is a massive difference between "you will never not have ME" and "you will always be very sick with ME"

Symptomatic relief, support, and learning how to pace your life can make a big difference to outcomes.

Many disease will never go away but can be managed. If we get a treatment that will be even better. From coeliac disease to diabetes to MS people have to learn how to live with a lifelong chronic disease. The earlier you know what you have the better.

Knowing how bad it can get is a difficult question but if someone asks they deserve an honest answer and if someone is bad we should not deny them their chance to talk about it.

There can be nothing worse than discovering how bad it can het when you become bad and realise you would have done things differently if you had known (think about those people dying from covid instead of being vaccinated)

On a more selfish note, if people know how bad it could get they may put more money into research and there are more likely to be benefits paid.

 

The problem is there weren't folks around who outlined how it could be managed; neither were there books. In the 1990s Dr Teitelbaum stated that the circuit breaker went, and his supplements would get it back on: ('from fatigued to fantastic' was the title of the book). He is actually a very nice man. But the point is there was no and is no guidance that is respectable.

 

That's a big part of the problem here - that guidance & support is is lacking.

Not telling the patient the truth (& being truthful doesn't mean you have to go terrifying people unnecessarily) is not going to.compensate for that lack of guidance.

The lack of guidance is probably partly down to lack of knowledge that can only be gathered by clinics monitoring patients and keeping track of long term outcomes.

It may also be partly political - if you want to "disappear" an illness then don't officially ask people to monitor and track and don't go educating patients. If you do that then you can't deny that this disease is often lifelong and can become very severe indeed.

 

He received a letter of warning from the FDA several years for making 'treatment' claims to "treat' alzheimer’s, heart disease, cancer and diabetes.

He's a shyster.

 

In the days before the internet it was possible to get information from the ME association which had articles by Dr Ramsay and others like him. Dr Speight has spoken of getting his paediatric patients into hospital where some of the nurses colluded with him to get the children to rest as much as possible to good effect.

There was a massive amount of knowledge about living with ME before the BPS got hold of it and ruined things.

Before the BPS started writing books about exercise and psychology being treatments for your CFS there were good resources for new patients available.

There has never been money available to do large scale trials of anything for ME but there has always been a large, experienced patient body ready to guide new patients.

 

I’m pleased to hear that about the UK. In Canada there was nothing at all!

 

Well, yes he makes lots of claims. His book is actually a great home remedy text— very useful. He says often he had ME and tried to help himself— I don’t think he has full health. And yes he still today says it’s the ‘ circuit breaker’ which goes in ME. I’d love a chance to ask where it is. Maybe it’s a metaphor—

 

I understand why people think positivity will ease the transition for the newly and more severely ill. I’m sure for many it does. The longer you believe you might recover, the more time you have to sit with the knowledge that you will not and to find a way to accept how your life has been reshaped.

For me, though, the false optimism about the likelihood of recovery and the efficacy of available treatments meant I spent years longer than I think I need have desperately looking for answers and waiting on research that moves too slowly to be relevant. It took several years before I stopped waiting and began to engage in the work of discovering how to make this illness work for me, and years more before I felt like I’d found a life I could live.

I realize the more severely ill may need to believe answers are just around the corner, but, being more moderately affected, I found the disconnect between the overly optimistic way patients and specialists often talk about the disease and the reality I saw incredibly jarring and difficult to square. It’s very hard to let go of hope that you will recover when so many pump hope. It’s hard to make yourself engage with your new realities when there’s always talk of some new researcher who’s definitely on the cusp of a solution.

Additionally, while I understand where it comes from, all that positivity means we don’t make enough space to discuss the negative emotions that come with living with a devastating incurable illness. It’s not unreasonable to want to commit suicide when you live with a devastating incurable illness. And if you feel that way, you need to know that others feel that way, so you feel less alone, don’t judge yourself negatively, and can learn strategies to get through the rough days.

 

The false optimism may be positively dangerous. That is what leads to the belief that the new treatment must work, the doctor wouldn't offer it if it were risky, the effects cannot be worse than what is being endured. Wrong on all counts.