A proposal for ME Action: a commitment to evidence-based medicine

[Guest 2176]

I don't think I buy the assumption in the first argument. I strongly suspect that a lot of patients spend a lot of money on treatments offered (that should not be offered) because they are desperate and then find themselves not just with a chronic illness but with no money and in some cases no home as a result. I am sceptical that being honest with people and saving them expense is more likely to lead to suicide.

Im not sure that it is more likely to lead to suicide, but rather that neglect is still harm and violation of the Hippocratic oath. So I guess i would argue that both not treating bc there is no good research on treatments and giving ineffective treatments could be violations of that oath.

So, we need a third option.

Also, there may not be effective treatments to actually improve function a lot but I have a hard time believing some generic palliative care approaches would not help with the suicide rate. Treatments for pain and insomnia and whatnot.

 

[Guest 2176]

My argument re the Hippocratic oath relies on ME being a special case to an extent. In a more minor illness with less suffering , not treating would be less harmful. But the default situation for pwME is more untenable than most illnesses.

My argument isn't about one or the other being clearly better. My argument is that whatever you do as a physician in the case of ME, you're violating that oath in the strictest sense. So we should make it so that that is not the case.

Also cost benefit analyses need to weight the cost of neglect in ME in a different degree than many illnesses.

As for saline , @Hip had an interesting argument why it may work better than oral rehydration, something to do with baroreceptors. But it's tangential to my ethical point.
If there was a treatment which improved Patients symptoms significantly for three or four hours , but did not overall alter the course of the disease, would it be worth it to do it? In theory? I think a patient and the average doctor would answer quite differently on this.

 

[Guest 2176]

My argument re the Hippocratic oath relies on ME being a special case to an extent

This may morally disgust people. Or "leave them cold". But a) i dont care. And b) I'm not arguing ME is worse than any Illness in history at any point, but that its very far up the scale in terms of suffering and Disease burden relative to treatments. I also think the mean quality of life gives a misleading picture as severe ME is obviously worse.
I don't think severe ME is worse than ALS for example. But I do think that its worse than many terminal illnesses that have some treatments.

One thing that makes severe ME worse than having most terminal illnesses is that in many cases , with severe ME, for a plethora of reasons, one cannot die and escape the suffering. And we have seen arguments even on this board that suicidal pwME Should be sectioned. As if death is the worst thing that could happen to a person. If we are to not have treatments that alter the course of the disease I think we ought to have legal assisted suicide and also palliative care available for pwME. Ethically anything besides that is barbaric. Truly monstrous ...

 

[Wilhelmina Jenkins]

Palliative care is essential. Treatment for sleep and pain is pretty straightforward and can be prescribed by doctors with a basic knowledge of the disease.

What often worries me is that when clinicians have patients flying hundreds of miles and paying thousands of doctors to see them, the patient expects more than palliative care. And the doctor is more likely to try treatments that have little scientific basis.

I also am concerned when clinicians claim to see evidence of abnormalities that no other clinicians see, either because of their expertise or because only the lab that they use can do a test correctly. That starts to look less like science and more like magical thinking to me.

 

[Guest 2176]

Palliative care is essential. Treatment for sleep and pain is pretty straightforward and can be prescribed by doctors with a basic knowledge of the disease.

It may be straightforward but many pwME do NOT have access to treatments for these, and much of that has to do with attitudes towaed the seriousness of ME. Its not a given that these are available because they are straightforward

 

[Guest 2176]

What often worries me is that when clinicians have patients flying hundreds of miles and paying thousands of doctors to see them, the patient expects more than palliative care. And the doctor is more likely to try treatments that have little scientific basis.

It probably depends on the physician. Some ME specialists are good at finding comorbid things or differential diagnoses that other doctors didn't find bc lack of a careful workup, and then they treat for these. Some ME specialists take insurance.

Many ME specialists in my experience, are straightforward about the lack of evidence for treatments and do not mislead patients. One may still consider it unethical to treat in that case but i think offering the patient the choice is fine. Ans different than chronic Lyme and other quacks who tell patients that there's total certainty behind their approaches. I assure this comes from my experience but don't want to discuss specific doctors because I don't want them attacked. But mine was honest in an almost bleak way but also thought that there were some treatments that had a slightly better than null value ans also comorbidities that could be treated ir palliative treatments (which a PCP would've never done for me as tbey don't consider this Illness serious ).

I also am concerned when clinicians claim to see evidence of abnormalities that no other clinicians see, either because of their expertise or because only the lab that they use can do a test correctly. That starts to look less like science and more like magical thinking to me.

this is definitely a problem with some clinicians but not all.

I would also argue thay theres no black ans white difference between ethical, evidence based practice and quackery. There are clinicians who may both use some tests that are not valuable and some that are. There are standard pcps that do things based on medical dogma that are not evidence based

 

[TiredSam]

Saline increases blood volume, but so does drinking a pint of lager and eating some potato chips.

Splendid.

 

[Guest 2176]

I think a good analogy could be the use of ssris in major depression.
Its my understanding that they are either no better than placebo in large reviews, or very slightly better than placebo in different reviews.
They are also far from risk free. And furthermore they were developed based on a theory of depression that was never proven.

And yet, I do not have a hard time believing they may work slightly for some patients.

Do I think that ssris should be pushed on patients as the main treatment for depression, and overhyped? No. Do I think patients Should be allowed to take them with informed consent and also have them covered by insurance ? Yes

 

[Trish]

I think one area is different for many pwME compared to other very disabling diseases, and that is the lack of recognition among some of the medical and care professions of the level of disability, and therefore care needs for people with severe and very severe ME. But the soloution to that is not off label dubious treatments, it is proper supportive care appropriate to the level of need.

Edit: To clarify, I'm not judging individuals who choose to try off label treatments, this comment was about the thread topic of what ME organisations should and should not recommend as valid treatments.

 

[Guest 2176]

If we are to not have treatments that alter the course of the disease I think we ought to have legal assisted suicide and also palliative care available for pwME. Ethically anything besides that is barbaric. Truly monstrous ..

I think while it may be technically true that no person can stand in anothers shoes, in a very strict phenomenological sense, the experiential gap between patients with ME and people who don't have it is so hard as to render it difficult for doctors to see thr severity of our suffering on every axis.

Some of the conversations re: palliation/allowing use of off label treatments on a cost benefit basis, and assisted suicide --all related, will be hard for anyone to grasp ethically who is not a pwME.

Nowhere in this thread did i suggest anybody should be recommending dubious treatments as a standard of care. But there is still robust scientific and clinical debate about the value of some of these treatments, and in the background there is a substantially different cost/benefit ratio than in other illnesses. The latter is what i wish to point out, more than get embroiled in another complex scientific discussion about a treatment or a few that I'm not even advocating in particular.

 

[Jaybee00]

I don't know where the 'knee arthritis' came from but I can guess.

The knee arthritis mention was absolutely not meant to be a personal call out— it was random. Maybe I should have said knee osteoarthritis— apologies if my words were misconstrued.

Well one difference between MECFS and other bad ones is that I can watch an hour of news on TV (I live in the US) and within that hour I’ll see about 6 ads with people dancing on the beach based on their treatment with Xeljanz, humira, enbrel, Hep. C and HIV treatments. People with Parkinson’s are shown playing in a symphony orchestra. No one with MECFS is dancing on the beach.

 

[Guest 2176]

I have a friend who has severe ALS. I do not envy him. He is totally paralyzed except his eyes but a brilliant artist and tinkerer who has a computer w eye tracker and great softwaee that allows him to make art and communicate.

He definitely has it worse than me. But, he was very sympathetic to my plight and said it sounded awful.
When I was most severe, I was less cognitively functional than him. Made less art, etc. I wouldn't trade places, at all. I'm just noting that bc it's interesting. This man is certainly more able to make art and communicate than Whitney dafoe.

But i would say ALS is one of the very few illnesses worse than ME. If one had a rawlsian veil situation but limited to what illness one would have (instead of social and class positions, etc) I would think that the existence of ME , especially since not rare, makes a choice of illness based on chance terrifying. But given how many illnesses there are that are better imo than ME, id gladly spin some roulette wheel with cancers and HIV/AIDS, and arthritis, and lupus and MS-- if i could eliminate ME.

 

[Guest 2176]

Its not a given that these are available because they are straightforward

Plus palliative care docs often use off label treatments with risks too. I think the point is we deserve to be comfortable and not in pain. My palliative care doc prescribed saline because she felt it was low risk and if I felt it helped my symptoms, why not.
Mcas treatments are often more palliative than function restoring too--but there are tests associated w mcas- and the treatments are often meds that are otc in many places
My personal opinion is that this illness might be bearable if I could treat thr pain and noise sensitivity and enviromental sensitivities. I may be accused of being a libertarian for this but why shouldn't we allow generic palliative treatments like opioids over the counter like they were early last century?
They dont pose the same public healrh risk as otc antibiotics.
Let's face it, almost nobody in the health profession will grasp and treat the full extent of our symptoms. Why should we not be allowed legal pain medicine, not gatejept by a doctor, and legal assisted suicide ?

 

[rvallee]

I've definitely made myself worse with trying to cure myself with dubious treatments. Better to accept that it's incurable (for now) and try to maintain quality of life.

Hadn't really thought about this but this is one of the harmful messages about the BPS "just try it" approach, that if something as ridiculous and devoid of any relation to reality as conversion therapy with a few extra steps is fine and dandy, promoted by respected institutions, then who is anyone to say that treatment X of dubious evidence is any more or less credible? The evidence base is essentially the same: some people "felt better" or attributed their remission (or misdiagnosis) to it.

The mantra is basically "at least give X a try". Well, X can take the place of literally anything here. Just because what is promoted is otherwise harmless, in other populations, does not change that calculation. It's therefore reasonable that many will try any other dumb thing because it could work.

It would be very hard to study frankly but eventually I think that it could be shown that this was one of the obvious consequences of the "there is no disease, try anything but at least try (our thing)" is so harmful, sends exactly the wrong message, when recognizing that it is incurable would put an end to dangerous attempts at trying any damn thing out there and work with the plane of reality we exist with, not one closer to Ankh-Morpork, where the world actually rests on a giant turtle but somehow there is no further turtle down.

 

[rvallee]

Also cost benefit analyses need to weight the cost of neglect in ME in a different degree than many illnesses.

Which we already know. It's about $100B per year in economic losses. Even accounting for a large error it would only take a few decades to add up to a $1T failure.

By any measure, a $1T failure that made everything worse is about as stupid as it gets. Insurance companies may profit handsomely, as do unethical people willing to shill for them but they would have been employed regardless, but the losses are already known and somewhat accepted. Which is really weird.

 

[Guest 2176]

I dont think that the comparison between trying exercise therapy and trying these other treatments is particularly apt. If one is made worse by ivig or ampligen or antivirals its easy enough to say "i would like to stop this" to the treating doctor. I think that many people early innthe illness try their own version or GET and depending on how hard they push, it normally doesn't cause as much lasting harm as a prescribed course of it would. I think everyone should be free to try GET.
What's a problem is when harms and evidence is not accurately reported and when a treatment becomes standard of care without evidence.
Also, i think thwre are some trearments that have emerged sort of organically based on patient observation and anecdotes, which i think deserve more investigation. Noone could say that GET/CBT emerged organically from a lot of patients saying "this helped me". It was pushed in a top down manner by clinicians who had a specific theory about rhe illness. So i dont think a biomedical anecdote is always the same as a LP or GET recovery anecdote. There are a lot of missed nuances to rating evidence--should we really take more seriously a recovery story from an anonymous person that may not exist published by Henrik vogts website--or an observation by a patient we know is a patient, that is transparent about a lot of their info? Not to say we should accept thr latter but the latter will yield more relevant info to the disease. If there were really a large volume of anecdotes of recovery via GET that were not anonymous and included lots od detailed info i might give them a thought.

 

[InfiniteRubix]

Apologies for sending out garbage into your mailboxes via previous posts. I just learnt that secondary edits won't hit mailboxes and you instantly received the first cut of nonsensical typos and autotext or voice recognition messes. Hadn't occurred to me.

Rationalising and editing text is my primary cognitive deficit nowadays compared to my past.

Lesson for the day - thanks @Hutan

 

[Guest 2176]

Splendid.

If only i could tolerate alcohol!

 

[JaneL]

1. Firstly, accept that scientific findings and associated treatments exist on a spectrum of consensus, and that this spectrum is critically important and determinable
   1. Scientific consensus, vs some/partial consensus, vs mere ideas (can be properly defined via previous example starting points I gave)

So, assuming I've not wildly misunderstood, the only thing that matters at the moment is settling the primacy of the first point, asking

• whether anyone disagrees with the first point and why? The issue is skirted around too often.

I disagree that a spectrum of scientific consensus is critically important. This is because the degree of scientific consensus does not always correlate with the quality of scientific evidence, which is what really matters.

 

[InfiniteRubix]

degree of scientific consensus does not always correlate with the quality of scientific evidence,

Fair enough, regarding use of that word, but the point that I keep coming back to is different (that word alone can blur my point, so I added synonyms and proxies for scientific status to that post's point 1). Sure, the idea of status needs to be properly defined with criteria and I gave a few examples in posts about how one can do that.

The point that I still don't want us to lose is that a specific scientific finding has a determinable status, a level of quality or usefulness, for which there may be proxies, like consensus or citations. The idea that a finding has a status shouldn't be controversial. But it is the issue that is implicitly or explicitly avoided in many posts. It seems to me that there is a deep discomfort and aversion to the idea that a scientific point can have a status. That's my worry - it is an open question that shouldn't exist here.

Yes, there will be fine grey areas and levels of expert subjectivity - but that's also what drives the science forward - finding holes to fill. But, we can't brush over that LDN, CCI or bananas have a determinable level of scientific insight available that offer a determinable status. That's my worry, it does seem to be brushed over.

Regarding the term 'consensus', the range of states needs naming and I agree consensus is an insufficient term. We can still draw on terms that a research committee or research project manager would be comfortable using. A better word than consensus, which escapes me but I was meaning, would capture the idea of consensus among the findings. For example, there is not a medical "consensus" regarding the role of anaerobic threshold abnormalities among medics, because the profession is ignorant of it on average. But there is a consensus in the science itself - consistent indicators of some sort of issue, with little to no contradiction that there is an issue (albeit little consensus yet about why or its overall parameters). But how one defines that status and what you do with it is a second order question - we still keep banging around the first issue.

Again, I'm still looking for agreement without dispute that a scientific idea or observation can have a status.... Agreement with that first point still seems to be up in the air.

Does anyone still disagree with this?

For the avoidance of doubt, having a status doesn't mean that status is ossified or permanent in any way.