Do lots of ME/CFS patients falsely believe they have ME/CFS or are they simply misdiagnosed?

[kermit frogsquire]

She promises a success rate of 97% to her patients but she also seems to believe that ME is time limited, even with a child who deteriorates she claims to have successfully treated their CFS but then says they must have a dissociative disorder due to the stress of being ill. They she tries to get the local CAHMS doctors to diagnose PRS and have the child placed in a psychiatric unit. But this counts are recovered for her since she declares that she has successfully treated their CFS (yes with a little advice, colouring charts and a couple of phone calls) even when they are still ill with the same symptoms. No medical examination is necessary for this either!

It's terrible and I didn't say she was right. Please read what I wrote. But the sad fact is that Esther Crawley sits on the MRC (Medical Research Council) and it is also a sad fact that her "overdiagnosis" view of the disease is the one used for diagnosis of ME in UK specialist centres - the very centres that will be used for UK research. Will it help to give 4.7% of the population rituximab? What results will we get out of that? As I keep saying, we need to subgroup first to prevent research being done on the wrong patients.

 

[ukxmrv]

I don't think that Rituximab is going to be given to EC's patients in the trial.

Patients of Dr Dr Amolak Bansal's seem to be the ones who are talking about recruitment.

If you have any evidence that EC's patients are being enrolled please show us.

We patients do want the right people enrolled in the study. However your arguments are jumping all over the place and it appears (like bringing EC's patients into this) as if you don't have the facts. when you have the facts then that is the time to make your concerns known.

There is no point tilting at windmills here.

 

[Bob]

Dr Esther Crawley further published data showing that 90% of her subjects recovered with nothing more than advice.

She promises a success rate of 97% to her patients but she also seems to believe that ME is time limited, even with a child who deteriorates she claims to have successfully treated their CFS but then says they must have a dissociative disorder due to the stress of being ill. They she tries to get the local CAHMS doctors to diagnose PRS and have the child placed in a psychiatric unit. But this counts are recovered for her since she declares that she has successfully treated their CFS (yes with a little advice, colouring charts and a couple of phone calls) even when they are still ill with the same symptoms. No medical examination is necessary for this either!

It's terrible and I didn't say she was right. Please read what I wrote.

You appeared to be claiming that Esther Crawley's research is sound and that 90% of her CFS patients recover after receiving advice.

 

[Tired of being sick]

When you have

Orthostatic Intolerance
Positive Rhomberg
Motor Disturbances
Overload phenomena
ADD
Post-Exertional Malaise and Fatigue
autonomic manifestations:
Immune dysfunction
Non slow wave or refreshing sleep
Severe sleep apnea
RLS
Neuroendocrine Manifestations
GHD
VERY Low T
Fibromyalgia
Chronic cervical pain(at the base of skull)
Most of the above, are easily diagnosed
Call it what ever you want..
And I'll call it for what it is:
Debilitating! Period!

Just about Every ONE of the above conditions can be debilitating on their own..

Add them together and you have a life sentence of pure living Hell..
But that's just the beginning
Add TRAINED to ignore mainstream Dr's to the list
and you have the worst case scenario
which most of us live!!

I'm currently seeing dr's that SPECIALIZE on each condition with hopes in order to get them to eventually communicate with each other and just maybe, one of em might experience the Aha moment...

 

[IreneF]

There has got to be a way to distinguish between being sedentary and being ill. If you've ever been laid up with a serious injury, you know that you can't do as much while you are recovering, but you gradually strengthen once you're up and around. In my case it was a broken pelvis. I worked back up to my previous level of activity, which was swimming two to three miles a week.

Now I am housebound.

 

[chipmunk1]

deconditioning or a couch potato lifestyle doesn't necessarily result in severe fatigue. sufferers do know this anyway that they have a different kind of fatigue but the general public can be fooled.

 

[alex3619]

deconditioning or a couch potato lifestyle doesn't necessarily result in severe fatigue. sufferers do know this anyway that they have a different kind of fatigue but the general public can be fooled.

The general public, and indeed the general doctor, does not have a point of experiential reference to assess this from. People then have to intuit what is going on, and when something is counter-intuitive then most people will reliably get it wrong.

It took me forever to understand it in myself. It was not intuitively obvious, and the arguments I was getting were the opposite of what what happening. So it took me decades to get to a point where pacing became a way of life. Push crash cycles were how I operated. I wanted to give up as little of my life as I could, I wanted goals, I wanted to do stuff.

 

[Undisclosed]

Please note, the last 87 posts were split from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014."

This is a very contentious subject so let's try to avoid rule breaches (personal attacks) so the thread can remain open.

Thank you.

 

[SOC]

I also suggest that we avoid broad insulting generalizations without evidence. We would not accept statements such as "80-90% of [pick a racial, ethnic, or religious group] are severely mentally ill" without some serious evidence to back it up. I propose we do not accept such ridiculous, bigoted, and completely unsupported remarks about a patient group, either. Prejudice is prejudice regardless of the target. PR should not be a mouthpiece for it.

 

[zzz]

No, @Bob there aren't any reproducible studies that show objective marker in a majority, you need to think again. Instead, there are large studies (with 200+ patients) where the majority have no objective markers. And there are studies by very small research groups where they have pre-selected a small group (less than 30) and objective markers are demonstrated, but these studies are never reproducible by other groups.

Are you sure that some cytokine abnormalities have not been reproduced?
I thought that some were quite, if not entirely, consistent.

From the Journal of Translational Medicine: Daily cytokine fluctuations, driven by leptin, are associated with fatigue severity in chronic fatigue syndrome: evidence of inflammatory pathology. Note that essentially all the authors are associated with the Stanford University School of Medicine, including Dr. Jose Montoya.

 

[Min]

I also suggest that we avoid broad insulting generalizations without evidence. We would not accept statements such as "80-90% of [pick a racial, ethnic, or religious group] are severely mentally ill" without some serious evidence to back it up. I propose we do not accept such ridiculous, bigoted, and completely unsupported remarks about a patient group, either. Prejudice is prejudice regardless of the target. PR should not be a mouthpiece for it.

Couldn't agree more , this thread appears to have been started, and sustained by such means as inventing absurd statistics, in order to ridicule those with myalgic encephalomyelitis.

 

[WillowJ]

Will it help to give 4.7% of the population rituximab? What results will we get out of that? As I keep saying, we need to subgroup first to prevent research being done on the wrong patients.

first, about misdiagnosis, it's true that a lot of people have an incorrect diagnosis of CFS, whether given by a doctor or whether their doctor gave them no diagnosis and they had to guess what they have (the people I know with no doctor diagnosis or testing know this is a guess--most people with a doctor diagnosis but not sufficient testing, and even some with lots of testing, are also unsure),

but the fact is that they do have some disease or another, and almost all of them can be diagnosed with something if careful diagnosis is done:
http://www.ncbi.nlm.nih.gov/pubmed/21132135 (there are more studies like this). ETA: It's safest to assume the undiagnosable cases are generally due to diagnostic limitations, not some personal failure of the patient. /edit
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3616604/

Second, nobody is suggesting giving Rituxan to Oxford-"CFS" [ICF] patients. All rituximab studies are talking about a carefully-tailored group, selecting patients who seem likely to have a serious immune or autoimmune disease who would be likely to benefit from a treatment for exactly that. There are many reasons for chronic fatigue, and as the Newcastle study above shows, they are not all the same. As both studies show, it is possible to more carefully differentiate who is likely to have a neuro-immune disease of what we are calling ME or ME/CFS.

 

[Griffin]

What other mental illness can be expected to be permanently cured by standing on a paper and shouting "STOP"?

Sometimes shouting "STOP" is advised to people with "intrusive thoughts", the idea being it interrupts the thoughts. However I don't think Intrusive Thoughts is a mental disorder in itself although it can be a part of OCD or stress. I am not aware of any additional advice to stand on a piece of paper.

 

[Hip]

@kermit frogsquire
I am curious: do you also think that irritable bowel syndrome and the often terribly painful condition of interstitial cystitis may be caused by memes as well? I believe the Wessely school stated that these were both psychosomatic conditions, along with ME/CFS.

 

[beaker]

Yes, but if any trial you do contains a heterogeneous group where 80% of them are mentally ill, what you get is results that can't be reproduced, results that mean nothing. This is exactly what has been happening for 30 years to ME patients. For research to be done, first patients must be subgrouped where only those with objective markers are studied.

Yes, that will exclude a lot of patients to start with, but ultimately we all benefit as we actually learn more about the illness and different groups.

It is very easy to tell those who have and those who do not by the "ME/CFS experts" . I was in many many studies in the early years. I've been worked over like crazy. There are things that show up in bw, and other tests. Patterns of abnormalities if not one set bio marker. I've met a lot of other patients in the studies.
I don't think studies done by these folk -- Klimas, Peterson, Bell , etc.. have anyone who merely thinks they have this instead of ME.
Quite frankly, I think after 28 years I can dx a person.-- except for the very mild cases.

Maybe there are some individuals who classify themselves w/ ME/CFS. But in the studies done by those who truly know this illness ? Nope. The problem comes from studies done by those who are clueless or who are intentionally trying to put patients in who do not belong in order to prove their theories.

 

[SOC]

For research to be done, first patients must be subgrouped where only those with objective markers are studied.

What is it you think researchers like Mella and Fluge, Petersen, Klimas, the Lights, and the Griffiths crew are doing? Do you actually think they are pulling people off the street and asking if they have fatigue? Do you think they use self-diagnosed patients in their studies? Do you think they don't know how to properly distinguish patients with primary psychiatric disorders from patients with measurable immune dysfunction, chronic infections, abnormal CPET results and so on?

 

[beaker]

I'm cross eyed from trying to keep up w/ this thread. We are all trying to get @kermit frogsquire to see that their thinking is "not good right now". {my ability to qualify it further is gone at the moment}
They aren't getting it. They aren't going to.
Maybe it's time we stop trying.
I'm out.
Good night all.

 

[SOC]

I'm cross eyed from trying to keep up w/ this thread. We are all trying to get @kermit frogsquire to see that their thinking is "not good right now". {my ability to qualify it further is gone at the moment}
They aren't getting it. They aren't going to.
Maybe it's time we stop trying.
I'm out.
Good night all.

Perhaps this is a good time to replay a graphic that @SDSue put up last week to help us determine if we are having a rational discussion.

http://twentytwowords.com/a-flowchart-to-help-you-determine-if-youre-having-a-rational-discussion/

 

[alex3619]

My comments were really just observations, rather than an attempt to propagate a conspiracy theory.

Issues that can be identified that might lend support to conspiracy theories typically have other, more easily understood, explanations.

1. People are not rational. We use reason as a tool. Reason is limited by what we know, including the things we know that are wrong. What we do not know can change the reasoning. This is very very important. When we discover someone doing something irrational, sometimes we think they have an agenda. More usually its just ignorance and bias.

2. Companies and organizations that do the wrong things are operating on incomplete knowledge, and often to legitimate agendas. The are mandated to work in the interest of their organization, not society. It is government's role to provide the balance. Sadly, governments worldwide are failing, badly, on this issue.

3. There is mutual reinforcement based on agendas of individuals, organizations etc. Political and financial support can flow from this. Its not conspiracy, its business as usual. In this case, business as usual that harms society. When this happens to generate research its called Zombie Science.

4. There is bias from financial and reputational reinforcement. If bad behaviour is reinforced, whether it be from organizations, researchers or doctors, then its easier to go down that path. This is not corruption, exactly, but this bias can severely distort the agenda and conclusions drawn.

This does not mean conspiracies do not exist. There is a famous quote I couldn't be bothered looking up that goes something like this: put any two people into a room by themselves and you can have a conspiracy.

There is also no doubt at least a few large insurance companies are working hard to change public perception on how to deal with chronic disease or disability. They are exerting political and financial influence. Yet sound data showing their claims are right does not seem to exist.

 

[kermit frogsquire]

Couldn't agree more , this thread appears to have been started, and sustained by such means as inventing absurd statistics, in order to ridicule those with myalgic encephalomyelitis.

The statistics that were quoted come from the research papers of others - It was Dr Crawley who stated that 90% of her patients recover.

Dr Crawley further stated that the incidence of ME was 4.7% of the population - Wessley claims 2-3%. These figures are 10 times higher than those of Jason et al (Candian Criteria).

It is clearly obvious that both Jason and Crawley cannot be right. One of them is either underdiagnosing, or one of them is overdiagnosing, or in my opinion - there both have it wrong.

The above point is largely academic, all that is relevant to this discussion is that 90% of people who are labelled with "ME" recover from "a little bit of advice" as Dr Crawley puts it. That is not bigoted, or ridiculous, it is a statement of her findings. I don't agree with them, but it doesn't change the fact that 90% of people diagnosed with this illness are recovering with nothing more than advice.

My belief - and now we are on to opinion because there is no proof of anything with regard to ME/CFS - is that Dr Crawley is massively overdiagnosing this illness. Crawley is getting her patients from parents who are taking their children to the doctor because they are nothing more than tired - the parents are seeking out a diagnosis for tiredness! Crawley then tells them they need more sleep - wow, she is a genius! (note sarcasm). None of this changes the problem of there being a huge cultural problem - an illness is being disguised by a meme.

My experience tells me, having met many of the aforementioned "Crawley" type patients, that they have nothing much wrong with them.

My experience tells me, having been to the Lightning Process, and having done other hokum treatments - all of those people claiming recovery from advice, homeopathy, coffee enemas etc - have a whole range of mental illnesses.

The NHS clinics, and that includes the clinics that will be used to select for the UK rituximab trial, have patients who are in the 4.7% Crawley cohort. Why? Really sick ME/CFS patients won't go to these clinics - due to the NICE guidelines we know we can't get treatment there!