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

[chipmunk1]

It is no wonder so many people think that have ME - that is what they are being told by magazines with tired celebs, newspapers and the TV ... and a lot of the time charities like AFME. The illness has been reduced to fatigue ... a symptoms nearly everyone has at some time or other.

Yes many people do have mild fatigue: Doesn't mean it's a false believe even when it's not ME.

It's not a delusion but lack of understanding of the illness. How do you deduct from this they are mentally ill?

Could be menopause, mild hypothyroidism, low testosterone, lack of sleep, too much work, stress etc...

 

[chipmunk1]

How can psychiatry be reformed? The point is that there isn't any objective proof, it is a judgement call. What you are calling for is to make it impossible for anyone to be sectioned even if they really are a danger to themselves or others.

I never said this. There are many cases where people do get locked up while having perfectly clear and coherent thought just because of some crazy pet theory of a psychiatrist. Objectively most people with somatisation disorders do not meet the criteria for insanity.

Do you lock up chain smokers because they are endangering their health?

What i meant is that it should be illegal to lock people up in absence of obvious serious mental illness.

In the Pelletier or Hansen case you see people getting locked up just because they have a diagnosis the psychiatrist doesn't understand or accept. The victims could do little to fight back and had to accept their fate. So much power can not be left unchecked. Sooner or later this will lead to abuse.

 

[Firestormm]

Can we refrain from inferring that all who are sectioned are 'insane' or that sectioning only occurs because of 'insanity'? Thanks.

 

[alex3619]

In the Pelletier or Hansen case you see people getting locked up just because they have a diagnosis the psychiatrist doesn't understand or accept. The victims could do little to fight back and had to accept their fate. So much power can not be left unchecked. Sooner or later this will lead to abuse.

Sooner or later? The history of psychiatry is a history of the abuse of power. Diabetics used to be locked away, considered crazy. People used to have their teeth removed, colon removed, lobotomies and insulin or shock therapy - in the hundreds of thousands too, at least collectively, not one patient here or there. The label of whatever psych disorder is considered serious has been used to depersonalize people. Its not someone with schizophrenia, its the schizophrenic. Its not someone who has depression, its the depressive. That is what they get called in mental hospitals, and I do not mean once upon a time. To initiate and support an abusive environment, first depersonalize or demonize your target.

So what do they call us? To justify abuse, first depersonalize or demonize someone. Its a time honored trick, particularly from despots and secret police ... or politicians.

 

[Tired of being sick]

Note to self

Sick people would rather argue than participate in helpful, peaceful,discussions..

Every negative thread here has x50 views and replies..

But I do know why CFS/ME patients love to argue

It makes them feel better

The adrenal glands are about the only glands that work in our bodies

But we overwork them way to far..

 

[Nielk]

Can we refrain from inferring that all who are sectioned are 'insane' or that sectioning only occurs because of 'insanity'? Thanks.

What is insanity?

 

[alex3619]

The adrenal glands are about the only glands that work in our bodies

But we overwork them way to far..

If my adrenaline gets going I am in deep deep trouble. It causes problems. In fact if my adrenaline goes up I go away, do something else, then come back.

I cannot speak for anyone else, but I argue if I think something is wrong, or something can be learned (just as important) but above all because these issues matter. People's lives are on the line.

There is also the issue that we do not have enough arguing for us. If we do nothing for ourselves, how can we expect others to do it for us?

 

[Cheesus]

I see you guys are pouring a lot of energy into this. There is nothing wrong with debate, but don't do it at the expense of your health it isn't worth it.

 

[GracieJ]

This whole thread is like going down the rabbit hole. Full of twists and turns and contradictions.

Out of all the arguments, one piece clearly stands out for me, and that is the promise of good research using a well-defined patient group. The focus is narrowing. It is happening. I just hope the political race driven by those who believe it is okay to demonize and abandon the sick is won in time by common sense. ME/CFS is slowly but surely now being defined. There is hope for recognition and acceptance.

 

[Dster]

Moderator Note:

The next 87 posts have been split off from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014"



Thank you Professor Edwards! However, I am a little more cautious about a retaliatory attack on the "psychiatric model". Having met hundreds of patients over several decades and spoken with experts from both sides of the fence my conclusion is that there must be common ground - diametrically opposed opinions are not helping patients and they are not helping patients for the following reasons.

1. There certainly are patients with purely psychiatric who are diagnosed with ME/CFS, possibly more than those with organic disease.
2. The above patients main psychosis is that they believe they have an illness. They predominantly develop symptoms through hearing or reading about them.
3. It is both dangerous to those patients (for reasons of reinforcing their psychosis) and to the patients who have organic disease (for reasons that their illness becomes dismissed through decades of never ending argument) to deny these facts.

Perhaps a better way forward would be to have some form of dialogue with the "opposite side", put forwards cases of definitive organic disease, likewise be prepared to listen to their cases of definitive psychiatric illness - and yes there are many.

Perhaps a better was forward would be to abandon the label "CFS" and "M.E." completely - and two (or more) new separate entities coined, a formulation devised to separate those with psychiatric illness from those with organic disease? And no, neither the Canadian Criteria, nor the ICC achieve this.

Do meme's exist? - of course. We can hurl abuse and claim it is intellectually devoid, but we all know they exist. They exist for both patients and practitioners.

- the entire cottage industry that developed around ADHD is a meme, in some locations some 30% of children in the USA were/are diagnosed with it.
- Homeopathy is the memsiest meme of all.
- All the defunct alternative therapies (dare I mention the Lightning Process) are memes.
- Integrative medicine and anything Dr Cheny says seems to become a meme.
- The psychiatric idea that M.E. is "all in the head" is a meme.
- And lastly I'm sorry to say it, the idea that M.E. is "real" is a meme.

It is true, the words used in the BMJ were harsh and unsympathetic and twenty-five years ago, I would have been pissed off by comments from some nitwitt psychiatrist calling Chronic Fatigue Syndrome a meme.

But what I'm pissed off about now is that there is still a diametrically adversarial approach to ME/CFS, there is denail from both sides, and no one is using their brains to sit down, talk about the issue like professionals and help patients! Jesus - let's not continue to make ME/CFS some kind of war of belief!

I would love it if, just as with MS, Parkinson's, stomach ulcer, diabetes, or any of the other illnesses that psychiatrists once claimed (in a meme-like fashion) were "all in the head", some brilliant physician would sweep in and prove them all wrong. But my conclusion is, after the aforementioned decades, that just isn't going to happen. And the reason it isn't going to happen is because of the mess that ME/CFS has become, literally everyone is being diagnosed with it no matter what they have.

So, I don't want anyone to curry my favour, I want a solution that will separate the hotch-potch of ME/CFS, dialogue between sides, and a way forward.

The lightning process isn't defunct, it's still alive and kicking - having cured me (in January 2014) and my colleague (in July 2013) of whatever it was we were suffering from - our respective (UK NHS) doctors both diagnosed our illness as CFS/ME.

 

[Isabelle]

Did I say that Isabelle? No. Please don't ridicule my suggestion as a way of dismissing what I said.

What I actually said was that Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases - I suggested that rather than argue over what ME/CFS is or what ME/CFS isn't, or case definitions etc, it would be worth trying to use Wessely's acceptance of a whole mass of people who have been caught up in his Oxford definition of the illness but who are seriously ill to get help for patients with serious physical diseases in need of medical treatment.

Helping patients is the goal, not a war between who owns the label ME/CFS.

It was a joke, Kermit. Based on comments you made about them getting together, and having a chat. And the joke was aimed more at SW than you. Lets just say - I'm not a fan - and I think the best contribution he could make to the discussion about ME/CFS, would be to retire.

 

[Scarecrow]

Did I say that Isabelle? No. Please don't ridicule my suggestion as a way of dismissing what I said.

What I actually said was that Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases - I suggested that rather than argue over what ME/CFS is or what ME/CFS isn't, or case definitions etc, it would be worth trying to use Wessely's acceptance of a whole mass of people who have been caught up in his Oxford definition of the illness but who are seriously ill to get help for patients with serious physical diseases in need of medical treatment.

Helping patients is the goal, not a war between who owns the label ME/CFS.

Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases.

There's a statement you don't often see. If that were true, surely it would be incumbent upon him to take a stance on more rigorous biomedical testing. I don't recall him doing so but perhaps you can show otherwise.

Personally, I wouldn't trust Wessely to be able to tell his arse from his elbow (even though he is a doctor) far less a patient with a 'serious physical disease' from one with psychiatric illness (even though he is a psychiatrist).

He used to have an article on his own website (http://www.simonwessely.com/) about Camelford. I'm fairly certain it was this one:

32. David A, Wessely S. The Legend of Camelford: The Aftermath of a Mass Pollution Incident. J Psychosomatic Res 1995; 39:1-9.

If not, it had very similar themes. It has either disappeared from the site or is cowering in a dark damp corner.

The Camelford incident of 1988 has been discussed on this forum before but, for those not familiar with it, 20 tonnes of aluminium sulphate was dumped in the wrong tank at a water treatment plant with the consequence that it contaminated the public water supply. It took 16 days for the water authority to inform the public that this had happened. However, during the initial aftermath they had been advising their customers to disguise the foul taste of the water by mixing it with orange juice.

Immediately after and in the months following the incident people who had drunk the contaminated water complained of symptoms including nausea, vomiting, diarrhoea and mouth ulcers

Eleven years later, in a study published in the BMJ (http://www.bmj.com/content/319/7213/807?goto=reply), the authors reached the following conclusion:

People who were exposed to the contaminated water at Camelford suffered considerable damage to cerebral function, which was not related to anxiety. Follow up studies would be required to determine the longer term prognosis for affected individuals.

Here are some of the known effects of aluminium sulphate poisoning:

http://toxnet.nlm.nih.gov/cgi-bin/sis/search/a?dbs hsdbterm @DOCNO 5067

0.2.7 NEUROLOGIC
0.2.7.1 ACUTE EXPOSURE
A) Aluminum accumulates in brain tissue and is a
neurotoxic agent. Ataxia and seizures have been
reported following ingestions and in patients with
compromised renal function receiving bladder
irrigations.
B) Mental status changes, including obtundation, lethargy
and confusion, may occur.
0.2.8 GASTROINTESTINAL
0.2.8.1 ACUTE EXPOSURE
A) Ingestions of small amounts of alum may cause dryness
and a puckering sensation of mucous membranes in the
mouth and throat. Rectal enemas containing 1% ammonium
alum caused mild cramping and nausea in the majority of
patients.
B) Ingestions of large doses may cause more severe
gastrointestinal symptoms or vomiting and diarrhea.
Solutions greater than 20% may produce gingival
necrosis and fatal hemorrhagic gastroenteritis,
although this is not well documented.

So, here we have people complaining of symptoms which are the same as the known effects of aluminium sulphate poisoning. What would a sensible person conclude? Here's what David and Wessely concluded in the Legend of Camelford:

We suggest that the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning [29].

As contributing factors to the reporting of symptoms, they cited

• The normal levels of somatic symptoms in any community [people have fatigue, headache and poor concentration all the time anyway]
• Anxiety related symptoms following the incident [they were anxious so they got the trots and felt nauseous]
• Litigation [they saw an opportunity to make a fast buck]
• Somatization disorders [they already had false illness beliefs]

Sound familiar?

Sometime in the last couple of years the article has been removed from the site or moved to an inconspicuous area, the government has issued an unreserved apology about Camelford and Wessely has been knighted.

There's still a prominent part of his website dedicated to CFS. I look forward to its disappearance, hopefully sooner rather than later.

 

[IreneF]

What is insanity?

"Insanity" is a legal concept, as "not guilty be reason of insanity". In Anglo-American law it derives from the M'Naghten rules--when as result of his mental disease or defect, the defendant (i) did not know that his act would be wrong; or (ii) did not understand the nature and quality of his actions.

The term is used differently in everyday discourse. As in, doing the same thing over and over and expecting a different outcome.

Mental illness is something else again.

 

[kermit frogsquire]

@Scarecrow

Wessely is fully aware that there are patients labelled with CFS/ME who are organically ill with serious physical diseases.

There's a statement you don't often see. If that were true, surely it would be incumbent upon him to take a stance on more rigorous biomedical testing. I don't recall him doing so but perhaps you can show otherwise.

Exactly - that is what Professor Edwards should be taking up with Wessely. It is Wessely's Oxford criteria that have resulted in so many people stuck in this label - people who Wessely admits do not fit - but at the same time Wessely says nothing publicly nor does anything to correct a known issue with his criteria. If he knows people are being misdiagnosed, surely it is incumbent on him to do something about it.

Professor Edwards needs to take a small case series of severe ME/CFS cases with him, people who Wessely would not diagnose, yet people who have been diagnosed with ME, and put these questions to him to try and find a solution. The people that Wessely won't diagnose with ME are the very people that have what is considered "classic" ME by people on this group - the very severe neurological illness, MRI abnormalities, or people with lots of abnormal blood tests.

Rather than argue over what ME/CFS actually is, let's just get help for the patients that don't come under "his" criteria.

As I have posted before, Wessely has reported that 2.6% of the population have ME, furthermore he states that those people have psychiatric or somatic illness (even independent review found the majority of these patients to be suffering from psychiatric illness). Yet on stricter criteria only 0.002% to 0.0073% have ME, or more recently that was expanded to 0.24% - regardless the figure of 2.6% is a massive error.

http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

The authors of the Canadian Criteria argue it is a problem of criteria. However, my belief is that they fail to understand the problem, the criteria become worthless once they are published because of the social-cultural nature of the phenomenon - see below.

Now we can argue till the cows come home about what those 2.6% actually have, but what we all need to understand is that they don't have the physical disease originally described as ME prior to the 1980's.

Recently Crawley et al expanded the definition of Wessely's version of ME even further to 4.7% of children - when we get to those kind of figures the same arguments as that with ADHD come into play. The incidence of ADHD has reached 20% in the USA. Many pediatricians are arguing - 20% of children do not have any disease, let alone a serious mental/neurological disorder. Similarly 4.7% of children are simply not ill with any organic disorder, mental or physical - the only thing that leaves us with is that normal behaviour and false beliefs regarding fatigue are being medicised. There are now many experts in pediatrics arguing that patients are being medicised by a complex social-political-cultural-economic interplay invloving the mass media, charities, and overdiagnosis by a section of the medical profession. It is clear to me, the same thing is happening/has happened to ME/CFS.

http://boards.medscape.com/forums/?128@@.2a5c1c0f!comment=1

 

[redviper]

Note to self

Sick people would rather argue than participate in helpful, peaceful,discussions..

Every negative thread here has x50 views and replies..

But I do know why CFS/ME patients love to argue

It makes them feel better

The adrenal glands are about the only glands that work in our bodies

But we overwork them way to far..

Or you know, the ME/CFS community is one of the most marginalized, exploited, and misrepresented patient groups currently in existence, and thus people here are advocating strongly for their rights.

Lots of chronically ill people use the internet to help research their condition, it's no different with ME/CFS. The advocates here on Phoenix Rising (and elsewhere online) that are challenging provocateurs like Wessely and Kermit are doing the community a great service.

 

[kermit frogsquire]

Or you know, the ME/CFS community is one of the most marginalized, exploited, and misrepresented patient groups currently in existence, and thus people here are advocating strongly for their rights.

Why is the ME/CFS community marginalised? Is it because so many people have now been diagnosed with the illness who just don't have it (according to the Leonard Jason et al) that the illness itself for the most part has become something more marginal?

If upto 90% of people claiming to have this illness (Jason's data), don't have the illness, don't you think that is what is marginalising the people who do have it?

Is it the fault of doctors that misdiagnosed? Well, perhaps. But I think it is a more complex issue. Sometimes those misdiagnosed become "advocates" too, and then they start advocating for a compeletly different illness. This was seen with Action for ME where they started advocating for "fatigue" and not ME, they started promoting the Lightning Process. When those misdiagnosed outnumber those properly diagnosed, the advocacy can becomes very twisted indeed - and that marginalises people more than anything.

We have seen advocates for B12 injections, advocates for LP, advocates for mercury filling removal ... all in the name of ME/CFS. Are any of those treatments valid? Therefore when I question the advocates for normal 1 day CPET testing, you will understand my frustration at how that marginalises the people who have very severe single day exercise test results.

 

[Undisclosed]

Why is the ME/CFS community marginalised? Is it because so many people have now been diagnosed with the illness who just don't have it (according to the Leonard Jason et al) that the illness itself for the most part has become something more marginal?

If upto 90% of people claiming to have this illness (Jason's data), don't have the illness, don't you think that is what is marginalising the people who do have it?

Is it the fault of doctors that misdiagnosed? Well, perhaps. But I think it is a more complex issue. Sometimes those misdiagnosed become "advocates" too, and then they start advocating for a compeletly different illness. This was seen with Action for ME where they started advocating for "fatigue" and not ME, they started promoting the Lightning Process. When those misdiagnosed outnumber those properly diagnosed, the advocacy can becomes very twisted indeed - and that marginalises people more than anything.

We have seen advocates for B12 injections, advocates for LP, advocates for mercury filling removal ... all in the name of ME/CFS. Are any of those treatments valid? Therefore when I question the advocates for normal 1 day CPET testing, you will understand my frustration at how that marginalises the people who have very severe single day exercise test results.

Why is the ME community marginalized? It might have something to do, in part, with people claiming that a large proportion of people diagnosed with ME actually have nothing physically wrong with them and therefore are deluded, psychotic or suffer from some form of mental illness.

 

[chipmunk1]

We have seen advocates for B12 injections, advocates for LP, advocates for mercury filling removal ... all in the name of ME/CFS. Are any of those treatments valid?

Improvements with B12 are so common in the CFS community that it is unlikely to be a placebo. People take lots of other vitamins without getting these effects. Why does it work? We don't know. But that doesn't mean it's invalid.

Your idea of "invalid" means you don't understand it.

I think that also answers your question why the CFS community is so marginalised. Because many doctors have the same attitude like you: They don't understand it therefore it cannot be real.

 

[Undisclosed]

Improvements with B12 are so common in the CFS community that it is unlikely to be a placebo. People take lots of other vitamins without getting these effects. Why does it work? We don't know. But that doesn't mean it's invalid.

Your idea of "invalid" means you don't understand it.

I think that's also answers your question why the CFS community is so marginalised. Because many doctors have the same attitude like you: They don't understand it therefore it cannot be real.

Unfortunately right now treatment is aimed at symptom reduction -- B12 for neuropathy, medications/supplements for sleep, medications/supplements for pain, antivirals to decrease viral load etc etc. These treatments are very valid and shouldn't be lumped in with psychobabbly CBT and LP which are invalid.

 

[SOC]

Therefore when I question the advocates for normal 1 day CPET testing, you will understand my frustration at how that marginalises the people who have very severe single day exercise test results.

No I don't understand at all. I don't see any way that it marginalizes people who have very severe single day exercise test results. Please explain.