"Time for Unrest": ME article by Nathalie Wright

It is interesting to note that SW does not believe the outbreak at the Royal Free documented by Ramsey was the same illnesss he was looking at and was being discussed in media articles in the 1980's. P. D White has also claimed the same in a presentation he did at a CFS conference in 2008 and which is available on YouTube.

 

@Jonathan Edwards, would you be able to elaborate on what is the grain of truth in Wessley's letter? Thank you.

 

A close family member of mine was diagnosed, at various times by various psychiatrists, with depression (melancholia once known as I think), schizophrenia, etc. There was talk back then it might actually be down to chemical imbalances in the brain etc.

Edit: Fixed punctuation, to avoid ambiguity I might be referring to psychiatrists with depression .

 

I think he is right to point out that there is probably more evidence for schizophrenia being a neurological disease than ME/CFS. That seems to suggest that 'psychiatric' illnesses are just as neurological so if ME/CFS is going to be called neurological why not schizophrenia or bipolar disorder? Why not make all psychiatric diseases neurological?

What he misses is that the term 'psychiatric' means something else as well, and ME/CFS does not fit into that something else. Whereas schizophrenia does. (Note that sick-note malingering is not psychiatric either, despite being a disordered pattern of behaviour.) There is actually a very complicated medical argument here about what we mean by disease classification, which is sometimes by pathology and sometimes by which professional is normally responsible for care. I am not at all sure anyone knows what 'psychiatric' means.

The bottom line for me is that Wessely is complaining about a problem that is to do with his inability to communicate helpfully with patients and his claim to a territory in academic practice. Calling ME/CFS a neurological disease may not be ideal. It might be better classified as a disorder of innate immune signalling - who knows. But ME/CFS is not classified to suit people who want to be experts in it. It is classified in order to optimise the situation for patients.

 

WHO has classified ME as neurological since 1969. Wessely's concern here about ME being classified as neurological needs to be seen in the context of the Wesselyites fighting and scheming for years to get ME reclassified by WHO and UK authorities as a functional somatic disorder. As such, many health insurance policies simply won't pay out, therefore loads of money saved.

 

Just saw that this was now at 10k shares. I like watching that tick up.

 

If there were a prize for internet posts I would give it to this one, @Jonathan Edwards .
I'd say I wish SW would see it but I fear it would just be assimilated, Borglike, into his crazy narrative.

 

I didn't bother.
I follow the rule of actions count louder than words. Excellent rule of thumb when dealing with people. Seems to bother manipulators though.

I gather he has now entered the 'Intent is magical' phase of special pleading? At best, intentions can only mitigate the result of actions, not erase them.

As for his horror at labeling? Isn't that what psychiatrists do? What is the DSM but a multi-volume of labels? A manual for labeling perceived deviance from an arbitrary norm?

 

A drunk person might say "Oi! Simon! We pay your wages!"

The thing that stands out to me when I read Wessely's letter of October 93 to Aylward (post 98) is the assumption that we are a nuisance, not amongst those they were both being paid from the public purse to serve. The tone reeks of it and the words suggest as much. It's the worst thing about the letter, imo.

I'm waiting with interest but not much expectation for his response to Anil's tweet.

 

Thanks Daisymay... it's always interesting to compare what Wessely says he says against what he is on record as saying isn't it?

 

Personally I do think we'll see a day fairly soon where both schizophrenia and manic depression (Bi Polar) are indeed classified differently. After all how can they be anything other than biological but with the unfortunate presentation of mood symptoms which whilst being horribly disabling to their sufferers are also easy pickings for those who think 'mood' is purely a lifestyle choice which can be changed via non-biomedical interventions?

 

I've got a feeling @Grigor could just keep slapping Wessely around the face with his own words ad infinitum. Gonna be fun to see where this goes.

 

I think that when considering conditions such as depression, schizophrenia, etc, then whatever the root cause may be, it primarily affects mood, perceptions, behaviour, feelings etc; your mental wellbeing, mental health. This is going to be true no matter what the underlying mechanism, even if it is a biological problem in the brain itself, or something else adversely affecting the brain. Your mental health is the primary condition. Psychiatry has a role to play here in addressing the primary symptoms.

For ME it is very different. Whatever the root cause may be, it primarily affects energy availability, probably at a cellular level; your physical capabilities, physical health. This is going to be true no matter what the underlying mechanism, even if it eventually turns out to be a biological problem affecting how the brain regulates low level physical processes in the body. Your physical health is the primary condition. Psychiatry has absolutely no role to play here in addressing the primary symptoms!

 

I have long since stated that this whole debacle is not just about magically disappearing ME its about growing the brand of CFS casting such a wide meaningless net.

Its just ludicrous that the BPS have controlled medicine to such an extent in the last three decades that they have shaped policy down to refusing tests on patients and then just declaring them to be suffering from "CFS" THEIR OWN FUCKING INVENTION, because they are, "medically unexplained".

Not only that but they managed to secure funding from THE DWP the agency who is responsible for paying benefits to the sick and disabled who require evidence gathered by state doctors to support their claims for the right to have money to feed themselves.

"CFS" is a brand it endangers far more patient groups than just people with ME.

 

Ah so he had the cure back then! Thirty years on with countless audiences with policy makers, researchers and doctors his cure is still a bullshit "thing of beauty" that has actually left people permanently disabled and incapacitated for 3 decades and many more to come.

Yet again somehow even with all those truths he is the victim!

 

Some comments under this article from someone talking about their insurance company that I tought could be of interest. @Dolphin ?

Belen
Thank you so very much Nathalie for writing such a well researched piece. It is rare to see big newspapers publishing the truth about the injustices many of us have endured and continue to endure. This illness robs so many of us of so much. It has a devastating impact not only on those of us unfortunate enough to fall ill with it but also on those who care for us. Like someone else here said, I would very much like to see the PACE trial articles withdrawn from The Lancet. The fact that they have not yet been withdrawn speaks volumes as to the vested interests of all those involved in the publication of what has been proven to be seriously suspect findings. I, like many others suffering from ME, had to endure graded exercise therapy and CBT sessions as a condition imposed by my employer's insurers. This unfortunately led to a serious deterioration in my ME. It took me years to return to a manageable baseline. Exercise is about the worse thing anyone with ME should undertake, it only leads to serious relapses and severe and prolonged post-exertional malaise, yet that is precisely what a large majority of NHS doctors are told by the NICE guidelines to prescribe for their ME patients. This is not only untenable but also unforgivable given the latest research findings.

Belen
Here's an interesting fact I didn't mention in my earlier comment. My employer's insurers hired a physiotherapist who is a great advocate of graded exercise therapy (GET) as "a most appropriate treatment for ME" to provide this treatment for me. I was told in no uncertain terms that I was required to undergo GET. "Failure to do so would trigger a reconsideration of my cover" I was told by them. And of course, I was to be reassured by the fact that I was in the hands of an expert, a member of the very panel involved in writing the NICE guidelines on ME/CFS used by all the NHS professional in the UK. She was THE expert on this disease I was told. Now, if that isn't a conflict of interest I don't know what is!

This is how this disease is treated in the UK and in many other places. Still, I know I was fortunate in that the suggestion of "maybe she's depressed" only came up once and was thankfully quickly dismissed by a more experienced GP. I became ill 9 years ago. At the time, and after many years working extremely hard to earn 3 higher degrees (BSc, MSc, and PhD), I was finally working in my dream job as a senior consultant in the city of London, I had recently married the love of my life, and I was living my dream life. I loved my job, I had a beautiful home in Surrey and a busy social life. The notion that I would willingly leave my life as it was to spend my days alone as a prisoner in my own home was just too unfathomable.

For the most part I was taken seriously by my doctors from day one, and although I did have my fair share of ignorant physicians too, these were outnumbered by the good ones. Many other ME sufferers are not as lucky as I was, and instead spend years being dismissed by ill-informed medical professionals who rather than admit their ignorance persist on believing that because ME was covered in their Psychiatry Syllabus at medical school it must be a mental illness.

This disease robs people of the lives they were meant to live, it makes people prisoners in their own homes, it detrimentally affects every aspect of their existence. Our dreams, ambitions, and willingness to be functional members of society do not stop at illness onset. And that is perhaps the cruelest fact of all because day after day we are forced by our bodies to just watch life go on without us...
+10

2 days ago
Joan
Hi Belen, many thanks for sharing your experinces. Can you share with us what happened when you were coerced into GET? Or did you refuse? If so, what happened then? Bw Joan
+2


13 hours ago
Belen
Hi Joan, I had a permanent disability insurance policy through my employer's insurers. In spite of the multiple specialists who saw me and agreed I was suffering from ME, the insurance company insisted that I was to be thoroughly assessed by their physiotherapist. As I mentioned, she was regarded as an expert because she had been a member of the panel who had written the NICE guidelines on ME/CFS. At first I was quite reluctant to subject myself to further investigations given all the many other hoops I had had to jump through with my own employer's occupational health doctors. Every time I had one of those assessments I relapsed and had severe flare ups of ME symptoms. When I mentioned to the insurers' representatives that I did not see the point of undergoing further assessments, they made it clear that if I refused they would regard this as me 'being uncooperative' and would likely need to reconsider the extent of my cover. Given that my salary covered the majority of our mortgage at the time (even if by then I was only receiving 40% of what I had previously earned), I was not in a position to refuse. So I had all the additional assessments that were required of me. The physiotherapist talked to me on the phone, then came to our home and looked at my medical records, and of course came to the conclusion that I did indeed suffer from ME/CFS. I was then started on a very, very gentle GET programme. This entailed going for brief daily walks around the block at first, and cycling on a static bicycle for a couple of minutes at a time each day. This would be gradually increased after a few days, provided it could be sustained. Unfortunately, I managed this for about a week, but then relapsed severely, and had to take time off the GET altogether because I was so unwell (all my ME symptoms increased as a result, I experienced severe migraines, painful sore-throat and lymph nodes, muscle weakness and pain, extreme exhaustion, shortness of breath, dizziness, foggy brain, intolerance to sound and light and painful joints). We started again a few months later but the same thing happened again, this time just after a couple of sessions. Every time I relapsed due to GET it would take me months to recover and return to my "40% of normal function" baseline. 'Thankfully', my insurance cover ran out after 5 years so whilst I no longer had an income and was forced to emigrate (we could not afford to live in the UK on my husband's income alone), it meant that no-one could force me to undergo a treatment that was clearly extremely damaging. I have never recovered and still operate at 30-40% capacity but with careful pacing I can manage minimal exertion and some few brief outings. My days of having a high flying career as a senior consultant for a global firm, or of crossing the length of Spain on foot are just a distant memory. These days, if I manage to wash up the breakfast dishes then I have achieved something for the day. Excesses in energy used lead to relapses. I often regard these as being forced to borrow money from loan sharks. You know you can't afford it but what alternative do you have? You borrow because you need to and then "get seriously beaten up" by the ME because you should have never allowed yourself the extravagance of using what you know you cannot afford in the first place...

 

When reading the above comments it is always worth recalling the 1989 article by Wessely, David, Butler and Chalder in which it was acknowledged that there was a possibility that some patients might be harmed by exercise, but that they could not be distinguished from those who were thought likely to benefit.

 

Where is that article?! That is like condoning the medical equivalent of Russian roulette - some patients will be harmed but not too many, so it's OK given others won't. I've said elsewhere how immoral (and maybe illegal) that is, given there is no knowing who will get harmed, and moreover, absolutely no warning or even suggestion is given to prosepective recipients of GET they may be harmed - quite the opposite in fact. Can you post a link @chrisb?

 

@Esther12 if 'Belen' were OK with it, that information in your post (though it would have to be properly validated) should be recorded in some evidence repository of some kind. In fact although it is anecdotal, would it be any use as some kind of evidence re the NICE guidelines?

And the multiple COI cited re the physiotherapist (appointed by the insurance company) being a member of the NICE guideline panel ... which of course is PACE-based, which we know had COI re investigators working for insurance companies ... it beggars belief ... except nothing does these days! It's 'incestuous' in the extreme.

 

Here it is

https://www.researchgate.net/publication/20602098_Management_of_chronic_post-viral_fatigue_syndrome