Plea to colleagues by doctor felled by ME

[lansbergen]

And similarly, medicine today thinks it has "nailed" everything. No you haven't. But now ,when you don't understand something, instead of making vague references to demons, you make vague references to the power of the mind. The psyche has become the new gap filler for what we don't understand. Equally vague, and equally unfalsifiable - perfect for the task!

Well said.

 

[A.B.]

And similarly, medicine today thinks it has "nailed" everything. No you haven't. But now ,when you don't understand something, instead of making vague references to demons, you make vague references to the power of the mind. The psyche has become the new gap filler for what we don't understand. Equally vague, and equally unfalsifiable - perfect for the task!

Humility and curiosity would seem to be the way forward. Admit uncertainty and ignorance, do more research, be more open to alternative ways to think about and view the problem.

 

[trishrhymes]

No, no, no, no, NO!

We should NOT assume there exists some population of patients with primarily physical complaints whose symptoms can be remediated by these interventions. By assuming this, we are validating the whole enterprise, saying this type of psychologising is totally fine, its all cool, as long as its not applied to us.

I'm willing to change my mind on this if I see solid empirical evidence for treatment-related improvements in any such group. That is improvement, over and above what could be accounted for by response bias.

This seems harsh. I don't think @bombsh3ll was suggesting some fatigued patients would be cured with antidepressants and exercise, more that at least for some fatigued patients they would not have done the harm they do to genuine ME patients.

 

[arewenearlythereyet]

I agree with a lot of what you say, @arewenearlythereyet. I just wouldn't blame the doctors. Most are decent people who are doing their best to help their patients. They genuinely believe in "psychological" illnesses and their ability to treat them.

Once you've been on the other side though - like we have - you have seen the harm that this type of reasoning does. Then you really should know better, whether you're a doctor or not.

I do have a different view of medicine as a result of my experiences. Medical training emphasises absorbing matieral, not questioning or debating it. I would like to see more doctors taught to analyse primary research papers so they can make up their own minds what to believe and what not to believe - you just can't afford to outsource this to the researchers themselves because they all have their own agendas.

But I realise there's so much to learn in medicine, and its difficult to know where to squeeze that in.

Certainly, the conventional teachings about mind-body relations need to be overhauled. So many doctors really buy into that "power of the placebo" stuff. For some, its become a mantra. Its not till you analyse the actual evidence that you realise that this effect is largely a reporting artefact, not an actual real health benefit.

I would also like more training on when to say "I don't know". I just saw a documentary about the treatment of epilepsy throughout history. The explanations that flourished when there was a lack of understanding. And the harm that the treatments did. And each era feeling so confident that they had finally had nailed it.

No, they hadn't.

And similarly, medicine today thinks it has "nailed" everything. No you haven't. But now ,when you don't understand something, instead of making vague references to demons, you make vague references to the power of the mind. The psyche has become the new gap filler for what we don't understand. Equally vague, and equally unfalsifiable - perfect for the task!

I agree that the doctors themselves are not at fault (all of the time) it's the culture that they work in which is at fault because it allows discriminatory behaviour to flourish and a distinct lack of accountability for their actions. This breeds a certain style of elitism and arrogance in some doctors (about at least half of them in my experience) that makes them believe that they are somehow untouchable unless they kill someone. If the NHS was a commercial organisation (a thought that I find repellent) this behaviour would be deemed unacceptable. The NHS needs to change, but I can't see that happening whilst there isnt a will to change and any change put forward by politicians is always in the context of cutting funding beyond what is realistic.

I don't think GPs should be expected to know all the research but they should, as a bare minimum follow guidelines that they are given and be inquisitive and caring enough to tailor service around the needs of the patient (particularly when it's challenging). If a diagnosis is challenging this shouldn't be a "heart sink moment", rather this should be viewed as an opportunity to embrace a challenge...they aren't on a factory production line after all and the state has invested a lot of money in their training and salary.

There should also be a better record of care that is scrutinised and constantly reviewed. This doesn't happen as a matter of course in the UK, partly down to the ancient record keeping in the NHS. As an example, in 2012 I was sent to hospital by ambulance with heart tachycardia, monitored and sent home. There was no record for my GP to review when I asked him to consider this event during my CFS diagnosis. Hopefully this is soon to change but in its absence of it GPs need to take more care to ask the right questions.

My take on the NHS is that I'm proud that we have it in the UK ......I would just like the old school pre NHS mentality of some doctors to be irradiated from it. I have had experience of many doctors since the 1970's and to be honest I don't see attitudes have changed very much since then.

I agree with your comments on epilepsy ..another example of a far more prevalent invisible illness that has no cure and little understanding as to the cause for at least half of sufferers (250,000 people in the UK). I guess some diseases seem to be less important to find an answer...perhaps the ones with less visibility and chances of death are not so much of a draw for the health service to prioritise?

 

[Hell...Hath...No...Fury..]

I think it is ironic (but to a degree understandable) that as patients we are so often disbelieved and dismissed by doctors, yet here is a doctor talking about their illness facing the same response from fellow patients.

I think this is a very good point for us all to ponder.

 

[arewenearlythereyet]

This seems harsh. I don't think @bombsh3ll was suggesting some fatigued patients would be cured with antidepressants and exercise, more that at least for some fatigued patients they would not have done the harm they do to genuine ME patients.

I would like a definition of "genuine ME patients". The trouble is how do you know who is genuine and who is misdiagnosed?

The previous post also suggested that CFS is a different diagnosis to ME. Since they have the same guideline for diagnosis and are interchangeable in the UK this is just false (whether you like the name or not). There are also no stats to identify misdiagnosis (that I'm aware of) so this is also speculative. Theoretically 100% of them could be accurate or 100% inaccurate.

There is also no evidence to show that if misdiagnosis does occur then what illnesses do these unspecified people actually have?

On this basis saying that the treatment of antidepressants and exercise is an Ok thing for patients that have an unspecified illness is irresponsible particularly as antidepressants are a drug that have significant side effects.

So I don't think it's harsh ...it's quite politely tame in my opinion (far more polite than my blunt blustering anyway)

 

[Chrisb]

I think it is ironic (but to a degree understandable) that as patients we are so often disbelieved and dismissed by doctors, yet here is a doctor talking about their illness facing the same response from fellow patients.

With respect I think there is a worthwhile distinction to be drawn as to the nature of the alleged disbelief and dismissal.

The one case involves the disbelief in the "reality" of the symptoms as expressed.

The other involves the disbelief in the identity and "reality"of the person apparently describing the symptoms.

These appear to be different categories of belief involving different evidence. Whether or not there is, or is not, grounds for disbelief on either basis is a debate I would not wish to enter.

 

[Mithriel]

Years ago, I read a book by a doctor with asthma and he made a very good point. Most people only go to see a doctor if they really need to and quite a few (he was talking in relation to asthma) will not go even though they ought to. BUT, it is the ones who rush to the surgery with every little pain and complain all the time that the doctor sees most, so they get a skewed view of patients.

I think we are victims of this. Though I also think we do not always help ourselves. My mother had bad asthma, but she kept telling the doctor how bad she felt, how terrible it was, that she struggled all the time. True, but I think doctors strip out emotion like that because they hear it so often. Instead I got her to be more factual. When she went back and said that she could only manage stairs if she crawled up them, that she had to take a puff of her inhaler every ten steps and so on she was believed and given much more help.

That is not to say we are to blame but it might be a good idea to think about what we would like from our doctor and how we can best get that.

Dry eye is a disease like ME that everyone thinks they have and that doctors always underrated. Things are moving forward in it because political shenanigans have not messed them up. The great strides being made are what I would wish was happening for us

Here are some links that might be of interest and could maybe help someone who is struggling.

http://www.dryeyezone.com/talk/arti...start/how-to-get-better-care-from-your-doctor
http://www.dryeyezone.com/talk/articles/just-for-doctors

Mithriel

 

[RogerBlack]

I would like a definition of "genuine ME patients". The trouble is how do you know who is genuine and who is misdiagnosed?

The previous post also suggested that CFS is a different diagnosis to ME. Since they have the same guideline for diagnosis and are interchangeable in the UK this is just false (whether you like the name or not). There are also no stats to identify misdiagnosis (that I'm aware of) so this is also speculative. Theoretically 100% of them could be accurate or 100% inaccurate.

The post also assumes that someone with 'CFS' symptoms will not later move onto 'ME-like' symptoms.
Also, I don't believe in the US the general diagnosis would be ME either.

Selecting on the PACE trial criteria, very few actually got better, significantly (not the same as an overall statistically significant result), when if there really were patients with 'just' depressive illnesses for example in the patient sample as most of it, you would expect them to, even just with normal remission of depression at 18 months.

Criticism of PACE is made for using Oxford criteria. But they're not.
They are using oxford criteria * fraction of people who go to the doctor * fraction diagnosed with CFS * fraction accepting referral to secondary care * fraction who did not get better before referral.

The current NHS guidance on CFS (and I assume it was the same at the time of PACE, last update was 2007) requires:

fatigue with all of the following features: new or had a specific onset (that is, it is not lifelong), persistent and/or recurrent, unexplained by other conditions, has resulted in a substantial reduction in activity level, characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days

(amongst other things).

I am not particularly happy about the patient group selected by PACE, but at least some of the criticisms aimed at it are muted in practice by how the patient group got to them.

 

[user9876]

If you look at the Phase II trial results, it seems to help hugely a fairly small amount of people, and even fewer of those get long-term recoveries.
Most people get some response, but nowhere back to close to normal, and most revert to close to baseline.

Then there is the question if treatment once with Rituximab with the wrong protocol could screw you up for a treatment with the right protocol that might cure 90%, not 10%.

Although some people did seem to recover with Rituximab it is not a cure it wipes out b-cells that produce antibodies that cause autoimmune issues. But b-cells come back and hence they need to be regularly removed. I think suggestions of recovery are dependent on where the memory for the antibodies resides (if it is in the spleen or bone marrow then it will be retained) but if the memory is just with b-cells in the blood then it would go with Rituximab.

But this does mean that an expectation would be for an on-going expense.

 

[perrier]

If you look at the Phase II trial results, it seems to help hugely a fairly small amount of people, and even fewer of those get long-term recoveries.
Most people get some response, but nowhere back to close to normal, and most revert to close to baseline.

Then there is the question if treatment once with Rituximab with the wrong protocol could screw you up for a treatment with the right protocol that might cure 90%, not 10%.

My understanding is that if results are hugely positive during a trial, it is opened up so that people can benefit. I believe his happened with the trial of repoopulate for cdifficile. Correct me if I'm wrong. So, therefore, am I to concluded that the Rituximab phase 3 trial is mixed and not hugely successful, as things are rather quiet.

 

[RogerBlack]

Although some people did seem to recover with Rituximab it is not a cure

By 'cure' I mean 'ongoing remission, as I understand it there were several (a few percent) people who 'recovered' with remission and no ongoing treatment.

Most get a transient response of a few months.

Rituximab now has biosimilars, which should drop the cost moderately - but only moderately, as it still needs an infusion.

(or not)
http://www.roche.com/media/store/releases/med-cor-2017-06-23d.htm (subcutaneous injection) which would reduce the costs somewhat.

 

[Hutan]

My understanding is that if results are hugely positive during a trial, it is opened up so that people can benefit. I believe his happened with the trial of repoopulate for cdifficile. Correct me if I'm wrong. So, therefore, am I to concluded that the Rituximab phase 3 trial is mixed and not hugely successful, as things are rather quiet.

The rituximab Phase 3 trial is double blinded - the researchers don't know who is getting the rituximab and who is getting the placebo. There is no way that they could know the outcome of the trial before the trial finishes and it is revealed which patients had what treatment.

So, we should not infer anything from the lack of noise about how the trial is going at this point. The double blinding means that the trial is very credible. It will give us information about the utility of rituximab that can be relied on and can not be fairly attacked by the BPS proponents. If rituximab is shown to be useful, that credibility will speed up the roll out of rituximab treatment around the world and further research.

Hang in there @perrier. I'm sorry things are so difficult for your daughter and you.

(I have heard somewhere that there are a good number of responders in the trial. While we don't know yet how many of these responders were given rituximab, it means that it is quite possible that rituximab has had a good effect.)

 

[Old Bones]

I'm not sure where the evidence is that shows that a significant number of people who claim they have CFS to a doctor are wrong . . .

Here's a rare controversial post from me.

I can't provide any evidence that "a significant number of people who claim they have CFS to a doctor are wrong", but . . .

When I was diagnosed with ME/CFS based on criteria as stringent as those in the not-yet-written CCC and ICC, my doctor (considered a specialist at that time, with many ME/CFS and FM patients) stated that only 1 in 10 of those who approached him looking for confirmation of their self-diagnosis actually had ME/CFS. This was a compassionate man who said this not to be critical, but merely to express his experience.

And, the psychologist who did my cognitive testing and confirmed the diagnosis, and who was also supportive and very knowledgeable about CFS (actually even more so than the specialist), said the exact same thing -- only 1 in 10. These doctors were independent of each other, so it wasn't a matter of "group think".

Many years later with all of the accurate information available on the internet, patients are better informed. So, the accuracy of self-diagnosis is probably much improved compared with in 1990. Yet, I still encounter people who claim to have "chronic fatigue syndrome" while leading very active lives with no functional limitations, and with fatigue being their only symptom.

 

[Woolie]

This seems harsh. I don't think @bombsh3ll was suggesting some fatigued patients would be cured with antidepressants and exercise, more that at least for some fatigued patients they would not have done the harm they do to genuine ME patients.

Sorry, @bombsh3ll, I didn't mean any of that as a rant at you. We've all had times when we've thought perhaps other people might be true "psychological" cases, just not us.

But the practice of inferring someone has a psychological problem, just because their symptoms/test results are not consistent with a current disease model, needs to stop. If you look carefully at the "treatments" for such problems, they do not lead to improvement. And they can do a lot of psychological harm.

Its important that we challenge that whole line of reasoning. Cos if we don't, nobody will, and the suffering will continue.

 

[Woolie]

Yet, I still encounter people who claim to have "chronic fatigue syndrome" while leading very active lives with no functional limitations, and with fatigue being their only symptom.

I think you extend to these people the respect you would hope to receive yourself. That is, that they are struggling with something real and difficult that's most probably not all in their heads. At least until you have compelling positive evidence that their difficulties can be attributed to a psychological problem.

Sure, they're not as badly off as most of us, and they may not formally qualify for CFS. But then again, we're not as badly off as some others. And we wouldn't like it if those more severe people scorned us for being "mild" and claimed that our problem was only psychological.

 

[Countrygirl]

Yes I would like that. I agree there must be many of us, each isolated and let down by our own profession.

(Excuse me interrupting the flow of conversation folks. )

@bombsh3ll

Are you around today??

I have received a reply from the doctor mentioned in the previous post and she says she would love to be in contact with you. I have her details and if you would like to PM me I will pass them on, if you are still happy with that.

 

[Manganus]

I'm yet another of those health care workers. To me, it's impossible to say if this writer is genuine or not. I see nothing that is sufficient to raise suspicions, nor do I see anything that convinces me.

Honestly, I do not understand how anyone can be so prejudiced - not in a forum with our experiences.

Yes, the writer may be an imposer. Yes, that would harm our cause. Most certainly, it would!
But jumping to conclusions makes worse harm.

Regardless of if this story is fake or true, we realize that not even physicians, not even psychiatrists, get believed by their peers.

That might change once a diagnostic tool is developed, and when the inner workings of the illness is understood.

But until then, affected nurses and doctors have both disadvantages and advantages from our training and experience.

• It's a disadvantage that we have internalized the same belief in psychological causes for physiological signs as the doctors we consult.
• On the other hand, it's an advantage that we have seen lots of patients with different conditions and different outcomes,
• and similarly it's advantageous that we've developed an improved understanding of how the human body functions.

 

[TiredSam]

Yes, the writer may be an imposer. Yes, that would harm our cause. Most certainly, it would!
But jumping to conclusions makes worse harm.

That's exactly how I see it, especially when there isn't much evidence for jumping to the harmful conclusion.

If he's not genuine, then he's someone bullshitting on the internet which is rather annoying but really so what? And does it really harm our cause and make us look bad - one potential bullshit merchant on reddit?

If he's genuine, then a fellow sufferer with a valuable perspective is being treated unjustly and being invalidated in a way none of us would like.

I would much rather remain quiet and risk a small chance that another internet bullshit merchant goes unchallenged than unjustly accuse a fellow M.E. sufferer of not being genuine, especially when there's no real reason to think he isn't.

 

[thijs]

I don't see why questioning the validity of this story, or asking for proof, would be considered rude or offending.

No one is questioning his ME, they are questioning the context. From being a doctor who treats CFS patients, to becoming one with the stereotypical symptoms, to trying lots of recent (largely unproven) tests and treatments, to paying $100k for a rituximab treatment after only a phase-1 trial, and everything within a timespan of <6 years.

Hypothetically, if I would claim to be a close friend of Barack Obama here, then I would understand if people asked to reveal my identity, or to deliver proof of said friendship before believing it. In my opinion some parts of this story reach the same level of unlikeliness. Of course that doesn't mean it can't be true.

From what i have seen on Reddit, it seems to be common to send proof to a moderator in private, whom then confirms the story in public (anonymously). Maybe he could do that. Of course it's not mandatory, but if his goal is to "beg fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone", it would be more effective. If I would be one of those doctors with the (crazy) belief of being immune to ME/CFS, then this story wouldn't convince me (yet).