ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

[Wolfiness]

@charles shepherd I was thinking as much of points 3 and 4, that it's ok to withhold domicilary services from housebound people with ME whereas people with other conditions are better catered for, or to refuse funding for inpatient treatment when a patient isn't able to attend outpatient services, the strong implication being 'Well, you can, really, you just don't want to."

And also it's about where the funding goes. I don't even necessarily object to Peter White's biopsychosocial model - I haven't been able to work out quite what it is yet, which shows a big failure by the authorities to propagate understanding - but I would be willing to believe an aetiology of the sort that Ashok Gupta proposes. My problem is that other biopsychosocial diseases get funding for their bio, and ME just gets funding for the psycho and the social.

I know you've put these things very well yourself in the national newspapers, but I think we the patients should all of us start being way more political, using every available avenue of complaint and redress until it becomes more of a nuisance to ignore us than to do right by us. This is how social justice happens. You lose and lose and lose but you keep on complaining! I feel like a gay marriage rights protestor I saw holding a placard in America saying "I don't believe we still have to protest this sh*t". Even many people clogging up the system with a litter of underfunded protest suits would be something - couldn't it force a test case to be heard as happened with bank overdraft charges?

 

[duncan]

No, @Hip, I think you are incorrect.

Applying "sickness behavior" to ME/CFS only underscores the possibility that ME/CFS may be a behavior defect.

You want to underline the possibility that ME/CFS may well be caused by a chronic infection, then you say ME/CFS is a sickness likely caused by a chronic infection.

Why muddy the waters? It does not help pwME; it arguably only compounds the misunderstandings and biases about our disease.

 

[Hip]

Applying "sickness behavior" to ME/CFS only underscores the possibility that ME/CFS may be a behavior defect.

Frankly, only to the scientifically illiterate.

You want to underline the possibility that ME/CFS may well be caused by a chronic infection, then you say ME/CFS is a sickness likely caused by a chronic infection.

It is patently obvious from your statement that you do not understand the concept of sickness behavior.

Saying "ME/CFS is a sickness likely caused by a chronic infection" is a completely different thing, as such a statement does not imply that the sickness behavior mechanism is involved. If you want to specify that the mechanism of sickness behavior is involved, you have to mention "sickness behavior" by name. There is no other way of doing it.

You are criticizing unconstructively. You raise some points, but you are not providing any alternative approach that could be adopted. If you provided an alternative approach that was scientifically accurate I'd be happy to follow it. But you haven't.

 

[charles shepherd]

I agree that when used in the context of ME/CFS, there may be a risk that the term sickness behavior inadvertently reinforces erroneous views of ME/CFS, such as the view that ME/CFS is a feigned illness put on by the patient (a view sometimes held by some none-too-bright sections of the general public).

In order to try to counter this risk, when I use the term sickness behavior, I sometimes initially refer to it as the sickness behavior response, to underline the fact that sickness behavior is a built-in response automatically triggered in human beings and animals when they catch an infection.

But let's not start thinking that the application of the sickness behavior concept to ME/CFS is some ploy to portray ME/CFS as an "all in the mind" condition. It is not. In fact it's the very opposite, as it links ME/CFS to infections.

Sickness behavior has been studied completely independently of ME/CFS. So as a terminology, it is nothing to do with ME/CFS, and unfortunately it is not really something that is likely going to be changed because of the needs of ME/CFS patients.

Sickness behavior has only recently been applied to ME/CFS as a result of Michael VanElzakker's vagus nerve infection theory of ME/CFS, which posits that a chronic infection of the vagus nerve might persistently activate the sickness behavior response, and thereby cause many of the symptoms of ME/CFS.

I like the fact that the sickness behavior response has been applied to trying to understand ME/CFS, because this underlines the possibility that ME/CFS may well be caused by a chronic infection.

One of the main architects of the sickness role behaviour model relating to the body's natural (cytokine mediated) response to acute infection is Profesor Robert Dantzer

We asked Prof Dantzer to give a key note presentation on this work at the first UK Research Collaborative conference in Bristol in 2014

This is from a review paper he has published in which he explains that this cytokine mediated response to infection can also trigger mood changes and depression in some vulnerable people:

Anyone who has experienced a viral or bacterial infection knows what it means to feel sick. The behaviour of sick people changes dramatically; they often feel feverish and nauseated, ignore food and beverages, and lose interest in their physical and social environments. They tire easily and their sleep is often fragmented. In addition, they feel depressed and irritable, and can experience mild cognitive disorders ranging from impaired attention to difficulties in remembering recent events.

Despite their negative impact on well-being, these symptoms of sickness are usually ignored. They are viewed as uncomfortable but banal components of infections1.

Sickness is a normal response to infection, just as fear is normal in the face of a predator. It is characterized by endocrine, autonomic and behavioural changes and is triggered by soluble mediators that are produced at the site of infection by activated accessory immune cells.

These mediators are known as pro-inflammatory cytokines, and include interleukin-1α and β (IL-1α and IL-1β), tumour necrosis factor-α (TNF-α) and interleukin-6 (IL-6). They coordinate the local and systemic inflammatory response to microbial pathogens. However, these peripherally produced cytokines also act on the brain to cause the aforementioned behavioural symptoms of sickness.

Recently, it has been suggested that ‘sickness behaviour’2,3, a term used to describe the drastic changes in subjective experience and behaviour that occur in physically ill patients and animals, is an expression of a previously unrecognized motivational state. It is responsible for re-organizing perceptions and actions to enable ill individuals to cope better with an infection4.

During the last five years, it has been established that pro-inflammatory cytokines induce not only symptoms of sickness, but also true major depressive disorders in physically ill patients with no previous history of mental disorders.

Some of the mechanisms that might be responsible for inflammation-mediated sickness and depression have now been elucidated. These findings suggest that the brain–cytokine system, which is in essence a diffuse system, is the unsuspected conductor of the ensemble of neuronal circuits and neurotransmitters that organize physiological and pathological behaviour.

In this Review we discuss how the brain engenders sickness behaviour in response to peripheral infections. We then review the evidence that pro-inflammatory cytokines can also trigger the development of depression in vulnerable individuals, and the possible underlying mechanisms. Finally, we discuss how these actions of cytokines in the brain might have a role in at least part of the increased prevalence of depression in people with physical illness5.


Reference:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919277/

 

[duncan]

a) An ad hominem attack. I'd hoped for better, @Hip. Frankly.

b) I understand the concept of sickness behavior. I also understand how it can be used to denigrate us. Do you?

c) The only reason I can imagine my needing to invoke "sickness behavior" into a conversation involving ME/CFS is if I want to invite psychs to the conversation. I do not.

d) I have already noted three alternatives: sickness attributes, sickness characteristics, sickness manifestations. But there are plenty more, and oddly, I never have to employ the word "behavior".

Thank you, @charles shepherd , for helping bring home my point.

If only because of where the BPS school has brought us pwME, we as a community need to be careful to treat our organic disease as a discrete, primary disease, with any psychological co-morbidities as secondary and not necessarily related. How ME is described and perceived still is not done in a vacuum; there is baggage and we all know that. We have to overcome a mountain of entrenched prejudice and contempt. To deny that would be a dangerous and silly gamble - one we should not assume until we have won more awareness as to the true organic nature of our disease than certainly we have to date.

This "sickness behavior", like BPS, would entangle physical components of disease with psychological parts and make them indistinguishable, at least potentially. It brings to mind how psychs want to achieve respectability by being accepted by neurologists, but many neurologists want little to do with those efforts.

I am at a lost for a good reason why any knowledgeable person with ME/CFS would advocate for any terminology used to describe his disease that caters to the BPS agenda. That some parts of the medical establishment uses the phrase means nothing more to me than one additional hurdle we need to overcome.

 

[Hip]

One of the main architects of the sickness role behaviour model relating to the body's natural (cytokine mediated) response to acute infection is Profesor Robert Dantzer

We asked Prof Dantzer to give a key note presentation on this work at the first UK Research Collaborative conference in Bristol in 2014

I love Prof Dantzer's work. Two of his papers that are really good are:

From inflammation to sickness and depression: when the immune system subjugates the brain

Cytokine, Sickness Behavior, and Depression

 

[charles shepherd]

Whilst I share your dislike of the term 'sickness behaviour' and agree that this term could easily be interpreted as meaning that it refers to s psychological response to infection rather than a physical one we do need to engage with this model of symptom production (i.e. infection leading to a persistently upregulated cytokine mediated immune system response) as this could turn out to be a key (and possibly treatable) component in the perpetuation of ME/CFS

 

[duncan]

@charles shepherd : Agreed. Only, we don't use silly terms that further engender confusion and misunderstanding.

 

[Hip]

a) An ad hominem attack. I'd hoped for better, @Hip. Frankly.

It is not an ad hominem attack. I am just pointing out that if you have a scientific appreciation of sickness behavior, you would understand that it is all about how certain inflammatory cytokines, principally IL-1β and TNF-α, with IL-6 possibly playing a role too, can cause symptoms such as fatigue, brain fog, malaise, depression, anxiety. It is all about how the immune system can cause these symptoms.

d) I have already noted three alternatives: sickness attributes, sickness characteristics, sickness manifestations. But there are plenty more, and oddly, I never have to employ the word "behavior".

How can those phrases possibly be an alternative when nobody is going know what they mean?! There is only one phrase that refers to "sickness behavior," and that is the phrase "sickness behavior". There are no synonyms.

What you are suggesting is like deciding to use the made up word "mpenga" to mean "car," and expecting everybody to understand you.

 

[charles shepherd]

I am only aware of anecdotal cases outside Norway where there has not been a response to rituximab and it would, of course, be interesting to know about instances where there has been a positive response

Dr Bansal did not quote any numbers and we were left with the impression that, quite sensibly, the when, where and how of a UK trial is the subject of on-going discussion

I did not get the impression that he felt that there were any robust clinical or biolological markers that could (in the present state of knowledge) separate people who were more likely to respond to rituximab and those who were less likely to respond

Rather concerning anecdotal reports from elsewhere:

(1) The Open Medicine Clinic is providing Rituxan for patients all over the world. I just finished my treatment with very little/no response. Very disappointing, but I felt I had to give it a try. It is very expensive, but there is a pretty good program to help with medication cost if your income is at a certain level and you can prove your insurance won't cover it. Even with the medicine free, the visit is $1500 to $2000 each (x6) plus hundreds of dollars of blood tests. I know there are certain infections they test for before you can go through it, I don't know if Lyme is one of them.


(2) swollen throat

Not Sore. swollen. Maybe swollen bfore rtxn but much worse after. , it's been 8 months on rtxn and over two months since last infusion.

Causing (worse) apnea. Had a home sleep study and apnea is significant.

Anyone else? Any ideas?

gargle with salt water helps the swollen throat a bit.

This seems to help as well:

http://www.1cascade.com/ProductInfo.aspx?productid=4333

Will try this next:

http://www.1cascade.com/ProductInfo.aspx?productid=2726

"Red root is a lymphatic stimulant useful in tonsilitis, sore throats, swollen lymph nodes and fluid-filled cysts. "

Any problems with these? If echinacea stimulates immune sys, bad idea aftr rtxn?


bad sleep

6/12
Pre-rituxan I used to usually sleep through the night, at least the majority of the time, even if not the same quality of sleep as I got pre-CFS. I haven't slept through the night once in the 5.5 months since RituxanIt's getting to be a pretty bad situation. I wake up a lot, and often can't get back to sleep after only 4 hours. I'm really sleepy during the day. When I don't actually wake up, I almost always toss and turn and sort of "half wake up" all the time.

D Ribose didn't used to affect my sleep, but since Rituxan, if I take it during the day (last dose way before bed time) or even in AM only, I lay in bed in a kind of half sleep state where I can't get all the way to sleep.

I had mild sleep apnea before Rituxan, and tha'ts gotten worse. But I think there is something more going on here as well given the "half sleep" (worsened by sugar).

There was a change immediately after Rituxan.

9/12
(update- been 8 mnths and slp a bit better BC of no sugar/carbs for 6hrs bfr bed). But still nt good. Apnea worse.

Curious if anyone else has noticed this?

CFS also wrse

I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in 8 months...

I have just been alerted to the fact that there are some more (often disappointing) anecdotal reports regarding the use of rituximab outside clinical trials in this PR thread below - along with some updates on the UK clinical trial from Jonathan Edwards:

March 27th 2016:

Q: When do you think a UK rituximab study is likely to happen? I am currently a patient of Dr Berkovitz in London. I'm desperate to get on a trial! @@Marky90 How much is your rituximab treatment in Norway? Good luck with it! Do you think it would be possible for a non-Norwegian speaker to go and get treatment?

A: I am afraid I cannot give any information about when a trial might occur in the UK. As you know I am retired and can only advise. There needs to be a clinical team in place with the time and resources to take care of the patients and that is not easy to organise in the present
system.

http://forums.phoenixrising.me/inde...reated-with-rituximab-privately.39972/page-13

 

[duncan]

@Hip, with all due respect, do you know what circular logic is?

 

[Hip]

@Hip, with all due respect, do you know what circular logic is?

I know what going round and round in circles is, and I have had enough of it.

 

[duncan]

What's the synonym for somatoform disorders?

What's the synonym for false illness beliefs?

What's the synonym for conversion disorders?

To be honest, I don't care what those synonyms might be, or even if they exist. Why? Because they have no relevance to my ME, even though they are falsely assigned to it by some.

So I don't need synonyms for them. Same for "sickness behavior". I can describe my disease quite nicely and accurately without the phrase, as I will wager most on this forum can, whether they are unoffended by the terms or not. (Incidentally, of course there are synonyms... )

 

[Snowdrop]

What you are suggesting is like deciding to use the made up word "mpenga" to mean "car," and expecting everybody to understand you.[/QUOTE]

An alternative such as sickness manifestation to replace behaviour is more like calling a car an auto--if the word car had negative connotations associated with it.

 

[Large Donner]

What you are suggesting is like deciding to use the made up word "mpenga" to mean "car," and expecting everybody to understand you.

Not quite Hip, Duncan didn't make up any words. The words he used as potential alternatives to "sickness behavior", already exist.... attributes, characteristics, manifestations.

He also pointed out quite rightly that the use of the word behaviour is way too easily manipulated to have a negative connotation, if one wanted to, in order to place any given condition into the functional /conversion disorders category.

 

[Hip]

The words he used as potential alternatives to "sickness behavior", already exist.... attributes, characteristics, manifestations.

I really do not believe that I am getting into such a surreal conversation!

Put "sickness behavior" into Google, and the first hit you get is the Wikipedia article explaining what sickness behavior is, followed by dozens of studies on sickness behavior. So if you look up this term, immediately you can see what it means.

Put "sickness attributes," "sickness characteristics" or "sickness manifestations" into Google, and not surprisingly, you don't find any relevant articles. Not surprisingly, because you have now changed the bloody term! You cannot just go around creating your own words or phrases, and expect them to mean what you want them to mean!

Unless of course you are Humpty Dumpty:

"I don't know what you mean by 'glory,' " Alice said.

Humpty Dumpty smiled contemptuously. "Of course you don't—till I tell you. I meant 'there's a nice knock-down argument for you!' "

"But 'glory' doesn't mean 'a nice knock-down argument'," Alice objected.

"When I use a word," Humpty Dumpty said, in rather a scornful tone, "it means just what I choose it to mean—neither more nor less."

"The question is," said Alice, "whether you can make words mean so many different things."

"The question is," said Humpty Dumpty, "which is to be master—that's all."

From Lewis Carroll: Through the Looking-Glass

 

[duncan]

You have to appreciate the irony: Lewis Carroll is perfect to describe how psychs have co-opted meanings to suit their purposes. Look at how they have usurped and corrupted the concept of sickness?

I just think we need to be promulgating solutions to our multi-tiered dilemma - not adding insult to injury by embracing terms that can be used against us... when we don't need to.

For a change, we can do something unilaterally. It is in our control. How rare is that? And it's such an easy thing: avoid the psych speak that empowers them and diminishes us. Don't be a part of hurtful language.

 

[Wolfiness]

Two things: one, I am wary of sickness behaviour being taken to mean lethargy and lassitude in pwME when many of us have far bigger problems with fidgetiness and impatience - the wired rather than tired part of sickness behaviour.

And two -

Frankly, only to the scientifically illiterate.

Yes, but even so, scientific illiteracy has led to homeopathy on the NHS and the antibiotic overuse crisis. So it's not negligible.

 

[Large Donner]

I really do not believe that I am getting into such a surreal conversation.

Put "sickness behavior" into Google, and the first hit you get is the Wikipedia article explaining what sickness behavior is, followed by dozens of studies on sickness behavior. So if you look up this term, immediately you can see what it means.

All this proves is that you need to stop using Wikipedia.

 

[Scarecrow]

Unless of course you are Humpty Dumpty:

Or Peter D White.