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

[Wyva]

Author: Litsa Dremousis, who has written similar articles for the Washington Post before, from the perspective of a pwME.

"Congress has allocated $1.15 billion to the National Institutes of Health for long covid research, and ME advocacy groups such as M.E. Action Network are lobbying NIH to allocate some of those funds for ME research.

Throughout medical history, treatments developed for one illness sometimes have been found effective for another illness. Could that be the case here?


After three decades spent mostly in bed, might I be able to ride my bike again? Could all the people like me proceed with lives at least a bit more normally — grocery shopping without having to lie down for hours or days afterward? Might we sleep and wake up even a little refreshed instead of feeling like our veins are infused with lead?


Is it wise or foolish to be hopeful right now?"​

Full article: https://www.washingtonpost.com/heal...bfddda-f099-11eb-bf80-e3877d9c5f06_story.html

 

[Perrier]

This piece, though well written, is so painfully discouraging, I am worried about the effect it may have on some severe people. I did not enjoy reading this at all; it was really searing.

 

[Peter T]

This piece, though well written, is so painfully discouraging, I am worried about the effect it may have on some severe people. I did not enjoy reading this at all; it was really searing.

We do not have any clear consensus on how to deal with discussing prognoses with other people with ME.

I remember some years ago not proactively offering information and support to a neighbour in the early stages of severe ME, because in the past I had found support group settings depressing and I did not know how to be constructive whilst also saying this horrible and it is likely going to continue to be horrible for foreseeable future.

However also it does not help pretending it is not horrible and that it will not go on being horrible.

 

[Perrier]

We do not have any clear consensus on how to deal with discussing prognoses with other people with ME.

I remember some years ago not proactively offering information and support to a neighbour in the early stages of severe ME, because in the past I had found support group settings depressing and I did not know how to be constructive whilst also saying this horrible and it is likely going to continue to be horrible for foreseeable future.

However also it does not help pretending it is not horrible and that it will not go on being horrible.

It will encourage folks to do away with themselves. Imagine a 20 year old newly diagnosed reading her piece. I understand Peter what you write is accurate, but maybe long covid will bring results.

 

[Arnie Pye]

There are 6 comments at time of writing this. Two that depress me are :

1)

She asked the wrong professional.

Ask an occupational or physical therapist.

We are a lot better at evaluating your functional capacity, identifying adaptations, and teaching you about assessing your level of perceived and actual fatigue so that you can make good decisions about your activity level in the moment and for the short and long term.

2)

We do have tools for post-exertional malaise. We teach patients about interoception, so they can more effectively attend to the cues they are getting before things get out of hand. We also teach adaptation and other strategies to help patients "game" their brains to avoid frustration, unreasonable expectations, and dealing with the demands of others. But don't depend on a doctor to do any of that. Ask an occupational therapist. I have been doing this for decades in rehab.

I'd never heard of interoception before, so here's a definition :

Interoception is contemporarily defined as the sense of the internal state of the body.[1] This can be both conscious and non-conscious. It encompasses the brain's process of integrating signals relayed from the body into specific subregions—like the brainstem, thalamus, insula, somatosensory, and anterior cingulate cortex—allowing for a nuanced representation of the physiological state of the body.[2][3] This is important for maintaining homeostatic conditions[4] in the body and, potentially, facilitating self-awareness.[5]

Source : https://en.wikipedia.org/wiki/Interoception

So, does that mean that if I learn about interoception I won't need tests or scans or x-rays in the future? I'll just "know" how my body is and fix it with my brain? In case there is any doubt, this is sarcasm.

 

[Perrier]

And I feel invoking Nazi atrocities is not fair. WE are not in a war time situation. America is the richest country in the world, and there is plenty of cash to go to funding diseases; the problem is attitude, prejudice, ignorance.

I prefer Whitney's pieces, actually.

 

[Invisible Woman]

I can see both points of view @Peter Trewhitt & @Perrier.

On the one hand if we aren't open with people from the get go when their approach to managing the condition is most likely to have a good long term effect, are we not standing by and letting them get hurt? We might possibly be condemning them to decades of severe illness and isolation.

We do also need to warn responsibly & not just terrify people - not everyone ends up severely ill but we don't actually know what percentage will.

On the other hand being given the truth in all it's bleakness is a very hard thing to bear without support. People with other devastating diagnoses bear it every day but they have the support we lack.

Is it fair, or right to deny someone the truth because the support systems aren't in place? Is it a double injustice?

If we don't let people see how serious ME can be then will they ever take it seriously and support their friends and family if it happens to them?

I've lost count of the anger and hurt caused by the well meaning who have read an article about someone who got better using crystals or a positive attitude or whatever. Asking me why won't you try this expensive new thing, don't you want to get better?

Perhaps if they'd read an article that explained what it's really like they'd have offered some practical help instead of hurtful and useless advice.

Edit spelling & typos

 

[Mij]

This piece, though well written, is so painfully discouraging, I am worried about the effect it may have on some severe people. I did not enjoy reading this at all; it was really searing.

"I was sitting in the wheelchair that I’d needed for the past four months when a physician concluded our appointment by getting on his knees, looking me straight in the eye and declaring, “You need to accept that you’ll never work again. You’re too sick.”

Just wow, what a terrible thing to say to a patient.

Isn't the work of the physician is to offer a vision of an alternative future, to change how the story ends? This provision of hope is what kept my spirits up when I was at my lowest, "I know I can't walk up a flight of stairs now, but I may be able to climb several flights of stairs some day".

 

[Perrier]

"I was sitting in the wheelchair that I’d needed for the past four months when a physician concluded our appointment by getting on his knees, looking me straight in the eye and declaring, “You need to accept that you’ll never work again. You’re too sick.”

Just wow, what a terrible thing to say to a patient.

Isn't the work of the physician is to offer a vision of an alternative future, to change how the story ends? This provision of hope is what kept my spirits up when I was at my lowest, "I know I can't walk up a flight of stairs now, but I may be able to climb several flights of stairs some day".

That statement is sadistic, the one the doctor made. Unfortunately, on the long ME road I’ve run in to a good handful of malignant physicians.

 

[Helene]

This article speaks the writer's truth. It is thought provoking, beautifully written and has a powerful effect on readers. What more could we ask for?

Painful that it is, articles like this have the potential to change society's perception and treatment of people with ME. Who could read this and think, "Well it's really not that bad"?

As to discouraging the newly diagnosed, certainly they deserve to know the truth that this outcome is a possibility. It won't be the sole article they read.

Here's a quote from the article that I found uplifting "I’m lucky because I’m able to walk with a walker, something many with ME are unable to do. I write from bed and still have a rich, full life brimming with loved ones and my delightfully curious dog, Jordan."

 

[Ariel]

"Tragically, people with long covid report many comparable symptoms. Because the two illnesses present similarly, some physicians have even misdiagnosed long covid as ME.

Paradoxically, that brings us back to hope again. Congress has allocated $1.15 billion to the National Institutes of Health for long covid research, and ME advocacy groups such as M.E. Action Network are lobbying NIH to allocate some of those funds for ME research.

Throughout medical history, treatments developed for one illness sometimes have been found effective for another illness. Could that be the case here?"

On what basis does the author say that the physicians are engaging in misdiagnosis? Some Long Covid patients meet criteria for ME/CFS at 6 months; on what basis should they be excluded from the diagnosis?

Why should ME research get the funds if it's a "misdiagnosis"? This is not really explained explored properly and the piece was very vague/not quite right about the details of the condition ("neuroimmuno illness", "degenerative") although some more accurate points were raised later on. I wish there had been more editing.

I am afraid I did not like this piece. I did not find it depressing; I found that it was a missed opportunity to explain the situation to the public and to the influential people who read WaPo. The anecdote about the doctor was interesting, but most people experience the opposite i.e. being wrongly told they are fine; not that they will never work again.

I did not find the comparison to a "vicious flu" to be helpful or convey the seriousness of the condition, especially as many people have been shrugging off the flu lately.

Sorry to be negative; the whole thing left me cold unfortunately. Like many of us, I don't want "hope", I want this illness to be addressed by medical authorities, and to be treated with respect.

 

[Mij]

As to discouraging the newly diagnosed, certainly they deserve to know the truth that this outcome is a possibility. It won't be the sole article they read.

The thing is that the physician does not know the outcome and yet chooses to discourage the patient with a negative outcome. Thankfully she has support and joy in her life. There are many that don't, and this sort of attitude could be the final straw.

 

[Perrier]

"Tragically, people with long covid report many comparable symptoms. Because the two illnesses present similarly, some physicians have even misdiagnosed long covid as ME.

Paradoxically, that brings us back to hope again. Congress has allocated $1.15 billion to the National Institutes of Health for long covid research, and ME advocacy groups such as M.E. Action Network are lobbying NIH to allocate some of those funds for ME research.

Throughout medical history, treatments developed for one illness sometimes have been found effective for another illness. Could that be the case here?"

On what basis does the author say that the physicians are engaging in misdiagnosis? Some Long Covid patients meet criteria for ME/CFS at 6 months; on what basis should they be excluded from the diagnosis?

Why should ME research get the funds if it's a "misdiagnosis"? This is not really explained explored properly and the piece was very vague/not quite right about the details of the condition ("neuroimmuno illness", "degenerative") although some more accurate points were raised later on. I wish there had been more editing.

I am afraid I did not like this piece. I did not find it depressing; I found that it was a missed opportunity to explain the situation to the public and to the influential people who read WaPo. The anecdote about the doctor was interesting, but most people experience the opposite i.e. being wrongly told they are fine; not that they will never work again.

I did not find the comparison to a "vicious flu" to be helpful or convey the seriousness of the condition, especially as many people have been shrugging off the flu lately.

Sorry to be negative; the whole thing left me cold unfortunately. Like many of us, I don't want "hope", I want this illness to be addressed by medical authorities, and to be treated with respect.

Bravo Ariel, Excellent observations

 

[Ariel]

A doctor once told me that I should be out "enjoying myself" as a young woman rather than being ill, as though I had made the choice.

Another told me he hadn't told me I was likely to live with ME for the rest of my life at our previous appointment years before because I was "too young" to be told to be careful for the rest of my life. (I was 17). (He was just covering himself in case it's not obvious. I actually had no idea to be careful, and had a severe relapse from which I never recovered.)

Another told me simply to wash my hair. He said ME was not a real illness.

Another laughed at me, to my face.

I am not excusing the doctor in the anecdote, who was cruel. But would we rather have the truth told in a cruel manner, or untruths told in a cruel manner?

Edit: I forgot about the doctor who shouted at me for going on holiday! (Another doctor suggested going on holiday). And then told me I did not want to get well.

I don't care how people say it anymore, I just want the truth - that is the point I am making.

 

[Chris]

Great discussion (especially on Severe ME Awareness Day). - With regards to the question about being hopeful or not, I see an alternative stance: It is to just stay strong no matter what, medical breakthrough and cure or not, spontaneous remission or not, whatever happens, meanwhile, just stay strong…

There are lots of things a newly diagnosed ME patient should be told and I don't know all of them but I would certainly include the idea that what's to come will likely be hard and require endurance. And to be prepared.

(and also, to learn as much as possible about post-exertional malaise! And as soon as possible)

 

[Graham]

This is such a difficult one. When I was running a local support group I struggled to find a good way to discuss this with newbies. I think the best way was to show them that those of us with ME were still able to have a laugh and do things and enjoy life, then to point out that people who had recovered or were much much better were unlikely to be in the group. But I never found a good way of persuading them that there was no magic cure, or of warning them off charlatans.

It was particularly difficult with youngsters. I tended to say that we just don't know what the prospects are, that ME is very serious, has to be treated with the greatest of respect, and that there isn't such a thing as a quick fix: you have to be prepared to work with it.

 

[DokaGirl]

I can see both points of view @Peter Trewhitt & @Perrier.

On the one hand if we aren't open with people from the get go when their approach to managing the condition is most likely to have a good long term effect, are we not standing by and letting them get hurt? We might possibly be condemning them to decades of severe illness and isolation.

We do also need to warn responsibly & not just terrify people - not everyone ends up severely ill but we don't actually know what percentage will.

On the other hand being given the truth in all it's bleakness is a very hard thing to bear without support. People with other devastating diagnoses bear it every day but they have the support we lack.

Is it fair, or right to deny someone the truth because the support systems aren't in place? Is it a double injustice?

If we don't let people see how serious ME can be then will they ever take it seriously and support their friends and family if it happens to them?

I've lost count of the anger and hurt caused by the well meaning who have read an article about someone who got better using crystals or a positive attitude or whatever. Asking me why won't you try this expensive new thing, don't you want to get better?

Perhaps if they'd read an article that explained what it's really like they'd have offered some practical help instead of hurtful and useless advice.

Edit spelling & typos

What I think too: sometimes a fine balance between hope and despair. How to tell a rookie pwME the truth without helping tip them into a black hole. I do think the public, medical pros et al NEED TO KNOW how terrible this illness is. We go round in circles with this. Or, we are taken round in circles with this. If there was more awareness about the lives ME wastes, then maybe just maybe pressure would be put on the powers that be to fund research and medical education commensurate with the gravity of this disease.

I think the article is very well written. Been there, done that with medics who dash hope. We sure run the gamut; everything from "You're crazy, lazy, benefit scrounging, CBT/GET will cure you, to you may somewhat improve, or you will never get better, and science will have nothing for you." I think others with different health issues share these experiences, but they may not be as enduring. Given persistence and perhaps luck, or skill, pwother illnesses may find their way to effective treatment. We're still waiting.

 

[Jaybee00]

"Tragically, people with long covid report many comparable symptoms. Because the two illnesses present similarly, some physicians have even misdiagnosed long covid as ME

Yes, this statement is problematic. Apart from being untrue, it is better to have MORE people in your group than less—having more people helps to better leverage fund raising, PR, etc. I really don’t understand the mindset of the people who keep wanting to narrow the scope of MECFS. I think Maureen Hansen was also quoted as saying long Covid isn’t MECFS.

 

[Mij]

I don't care how people say it anymore, I just want the truth - that is the point I am making.

There is nothing wrong with a doctor telling their patient that they simply don't know.

 

[Invisible Woman]

There is nothing wrong with a doctor telling their patient that they simply don't know.

There isn't but on the other hand an "I don't know" from your doctor cuts no ice with your boss, bank manager, DWP etc.

People need to know because they need to manage the situation and sort out their finances to plan for the worst while they hope for the best.

We can't have it every way.

This is also part of the issue with a disease like ours. The lack of recognition of severity, the fact you don't belong under a specific speciality that have nurses and can point you in the direction of support and advice etc.