Horrifying article in Sunday Times

[biophile]

Has this happened on Wall Street yet?

 

[SilverbladeTE]

Has this happened on Wall Street yet?

View attachment 5014

no but we got this few years ago, "Chrisitans" praying before the Golden Bull in Wall Street to make the economy recover....
think they skipped out ENTIRELY on what Moses and Jesus said, don't ya think?

I consider myself "Christian" but nitwits like those have made that term very very....problematical, for millennia, sigh

 

[MeSci]

no but we got this few years ago, "Chrisitans" praying before the Golden Bull in Wall Street to make the economy recover....
think they skipped out ENTIRELY on what Moses and Jesus said, don't ya think?

View attachment 5015

I consider myself "Christian" but nitwits like those have made that term very very....problematical, for millennia, sigh

The same thing occurred to me this week as analogous to...can't remember what. People who claim to be something but the original concept has become distorted so much that they are the opposite. 'Christians' who hate their neighbours, judge everyone and accumulate wealth. Wish I could remember the association with ME!

 

[Firestormm]

Published letters (taken from MEA FAcebook):

From Sunday Times 12th May 2013

Time to turn tide on ME therapies
MY DAUGHTER was diagnosed in 1999 at the age of eight with myalgic encephalomyelitis (ME) by the late Dr Alan Franklin, a paediatrician specialising in children with this illness (“Scientists under siege”, Magazine, last week).

Dr Franklin travelled the country supporting families threatened with removal of their severely ill ME children, most of whom were housebound — and many bedridden and tube-fed such as my daughter — with symptoms that included, among others, paralysis, nerve and muscle pain, nausea and loss of speech.

These children were suffering from what the World Health Organisation classifies as a severe and chronic neurological — not mental — illness. Sadly, families with such children are still being pressured today to make them undergo inappropriate and invasive treatments precisely because the prevailing view is that the chronic element of ME is psychological. Too many of my daughter’s friends remain bedridden with horrendous symptoms because of the misguided use of “therapies”.

Kathleen Goodchild, St Albans, Hertfordshire

Positive action
Far from “skewing a whole branch of medicine”, responsible activism in ME is directed at promoting and encouraging scientific research and its funding. Activism has been pivotal in improving research and treatment for many diseases, including Aids, multiple sclerosis, breast cancer and malaria, with the government bringing up the rear.

Jean Harrison, Salem, Massachusetts, USA

Help, not hinder
Unfortunately your article will reinforce the idea that ME/CFS (chronic fatigue syndrome) is a mental health disorder and can therefore be dismissed. I am the sister of a severely disabled sufferer for 26 years, and we are desperate for the cause, whether psychological or not, to be found and for an effective treatment.

This can only happen with far greater funding for research into this devastating condition. The misguided actions of a small minority will only hinder this and thereby prolong the agony of sufferers.

Debbie Gilbert, Watford, Hertfordshire

Cause for collaboration
The UK’s leading ME/CFS charities deplore the harassment or abuse of researchers undertaken by a tiny but vocal minority of people. Many sufferers are living without treatment or support, or even a proper diagnosis — this should be the real headline news.

We wish to support researchers to help us better understand the causes and to improve treatments. The future for many thousands of patients will depend on constructive collaboration between patients, charities, funders and scientists.

Mary-Jane Willows, Association of Young People with ME (AYME), Action for ME, Chronic Fatigue Syndrome Research Foundation, ME Association, ME Research UK

Joining forces
Thankfully these days there are a good number of specialist NHS services for those affected across the UK by CFS/ME. These services deal with 9,000 new referrals a year in England and since being established in 2004 have seen 70,000 cases.

We are much encouraged by collaborative research led by experts in the field and supported by the Medical Research Council and national charities that is looking at ways to improve and expand research into this life-changing illness, which affects about 1-2% of the adults and teenagers in Britain.

Michelle Selby, British Association for CFS/ME, Dr Alastair Miller, Consultant Physician in Infectious Disease, Liverpool CFS service

Therapist support
There is another understanding of ME that sees it as neither a result of a virus nor a mental illness. Therapies that find the roots of ME in primary, fundamental emotions see the physical condition as essentially a symptom of these.

These approaches (which are not cognitive behaviour therapy or otherwise psychotherapeutic) say that the key lies in recognising these fundamental emotions, their sources, and taking constructive actions based upon them, raising the consciousness of an individual and so empowering them.

Crucial to this, of course, is the therapeutic relationship between the therapist and the client, as my wife has discovered in her own practice.

Andrew Whiteley, Consett, Co. Durham

Research moves on
Legitimate requests for further information, missing data and clarifications (FoI or otherwise) should not be conflated with the reported “extremist” behaviour. Michael Hanlon’s article did not appear to be particularly fresh or current. An article in The Times in 2011 featured most of the same protagonists, claims and counter-claims.

Thankfully serious scientific research has moved on, as reported in The Times (April 23), “Scientists have found compelling new evidence for an underlying biological cause”.

Duncan & Lesley Cox, Rugby, Warwickshire

Majority report
What a pity that you devote an entire article on ME to publicity for the 50-80 activists engaged in an abhorrent hate campaign and ignore the 550,000 ME sufferers, who wait patiently for some effective treatment for this dreadful disease. I have had ME for 21 years after catching a virus on holiday and it has robbed me of any kind of normal life.

All I, and most sufferers, want is some effective treatment which at present does not exist (I have tried them all!). We do not care what our illness is; we just want someone to find out the cause and hopefully a cure.
Two weeks ago, a report in The Times, “Biological breakthrough offers fresh hope for ME sufferers,” featured the work of the dean for clinical medicine at Newcastle university, who has discovered “very real abnormalities" in the cells of ME sufferers — proof that it is not “all in the mind" . It’s a pity that you did not focus on the newer more hopeful biomedical research such as this.

Rosey Lowry, Saxmundham, Suffolk

Activists miss the target
My wife was diagnosed with a severe case of CFS some months ago. As there is no medical cure as yet, we had to tackle the disease head on if she were going to have a life of some normality. We gleaned all we could from the book by Jacob Teitelbaum and are making good but slow process towards recovery.

The emotional and mental fatigue is as debilitating as the physical side, and we both wonder just how the “activists" are able to spend so much time and energy in their vitriolic and pathetic pursuits. Sufferers from ME/CFS require much patience, long term care and understanding; a cure is much needed from wherever it may emerge. Those researching the illnesses are to be applauded.

Jeremy Rugge-Price, Orford, Suffolk

 

[taniaaust1]

We, ME/CFS patients could use the same methods as Wessely. That is use the press and media and use a grouping of eminent doctors and scientists to co-author and co-sign letters and present articles to the Times, the Guardian, the Observer, the Mail, the New York Times, etc. etc. If we copy his methods to advance a biological agenda then we can battle him and win.

I have drawn up a listing of researchers and doctors we all need to contact and form into a group known as the 'Biological doctors and scientists group'. All letters and emails to the press and media and to scientific journals worldwide should be passed to these people first for co-authoring and co-signing. This will add scientific credibility to ME/CFS and its biological aspects.

Dr. Nancy Klimas
Dr. Daniel Peterson
Dr. Paul Cheney
Dr. Kenny De Meirleir
Dr. Byron Hyde
Dr. Derek Enlander
Dr. Hooper
Dr. Edward J. Conley
Dr. Charles Lapp
Dr. Kerr
Dr. Martin Lerner
Dr. Martin Pall
Dr. Olav Mella
Dr. John Chia
Dr. Jose Montoya
Dr. Jacob Teitelbaum
Dr. Konstance Knox
Dr. Buchwald
Dr. Jesse Stoff
Dr. CL Jardin
Dr. Sarah Myhill
Dr. Rosamund Vallings
Dr. Gorter
Dr. Majid Ali
Dr. Vance Spence
Dr. Julia Newton
Dr. Vincent Lombardi
Dr. William Weir
Dr. Nash Petrovic
Dr. Bridget Huber
Dr. Luc Montagnier
Dr. Anthony Komaroff
Dr. Ablashi
Dr. Jay Levy
Dr. Hornig
Dr. Ian Lipkin
Dr. Maes
Dr. Curriu (Spain)
Doctors from PHANU, Australia
Dr. Bateman
Dr. Daraniuk
Dr. Schutzer

You can add a few more to the list.
Can we all start this week ?

the issue is we need all those people focused on their patients and research.. not spending say a quarter of their time fighting what is going on. Its only by good research which is then backed by others, will we ever be free of the mess . Let our researchers focus on their fields.. the research.

 

[taniaaust1]

I've spotted a rather significant contradiction here:

But later, Wessely says:


So, first he says that there are no complaints from his own patients, at his clinics. And then he indicates that people have real issues at his clinics when subjected to his (inappropriate) therapies. So much so that they feel threatened and resentment.

Bob.. I think when he said that part about his patients finding patient groups threatening. I think he was rather refering to say patient groups like PR or other patient groups about the place, I dont think he was refering to any patient groups he runs.

 

[Bob]

Bob.. I think when he said that part about his patients finding patient groups threatening. I think he was rather refering to say patient groups like PR or other patient groups about the place, I dont think he was refering to any patient groups he runs.

Ah, yes, I agree with you. It seems that I misread that. Thanks Tania, I'll amend my post.

 

[taniaaust1]

It's just my take on it, and I might be way off, but my thoughts on it are as follows...

Governments don't like any types of 'outbreaks', or other such unpredictable events, and they quickly move to put a lid on potentially escalating public relations disasters. Outbreaks or other such unpredictable events can quickly escalate into public alarm and panic, and very bad public relations disasters for governments. Governments don't like 'unknowns' and they like to keep a lid on alarming 'events', including health scares (unless the public 'alarm' helps them in facilitating their desired policies.)

So, when 'unknowns' occur, governments look towards people who can give them quick, simple but reassuring and convincing answers.

So true. Something very bad happened where I live... all the fish started dying and were being washed up on many beaches, something like 26? dolphins also washed up dead. I got a lift to the local beach only a few minutes away from my house to check it out for myself (this was after they'd done an offical clean up of the dead fish). It was heartbreaking.. the beach was still littered in baby fish, hundreds and hundreds of them all species with some bigger fish there still too (whiting, gar, reef, thousands of leather jackets etc), every inch or two of that beach was a dead fish, some a ruler length in size (I'd hate to know what it looked like before they did the clean up of it).

Immediately when this started happening the local authorities tried to calm people down by giving out answers (even thou they didnt have a clue as no testing had been done.. the authorities never told the truth and were unwilling to admit they didnt know). Instead we got told some almost laughable lies.. (makes one wonder how dumb the authories think the general public is).

First we got told.. the sea had been rough the day before and killed all the fish (it really appeared no rougher then normal)... when the issue continued for the next 5 days and fish were washing up on more and more beaches up the coast.. then we got told the sea water was warmer then normal and killing them due to that, when that story wasnt washing with the public the next one the authorities gave was .. algae in the water killing them (interesting thou if the authorities really believed that that they never put a ban on swimming here so people were swimming where there was supposively toxic algae killing all the fish so from that alone it was an obvious LIE). Then the dolphins started dying (it was only at that point probably due to public outrage/protest did the authorities start to say they were doing testing).

The latest story we've been given is they have just found a virus which has never been see in my state before in 2 of the dead dolphins one which was a baby.. and they are still saying the fish all died for a different reason.. the algae for those. umm strange isnt it that all these fish and dolphin deaths occurring within a matter of a couple of weeks with the fish still dying but are supposely different causes, rather very coincidental that one would be. So I believe they are still lying. (found the virus in 2 of the dolphins in over 20 dead dolpins umm.. if it killed them all...wouldnt it have been found in them all?)

Who knows..but one thing we can be sure of is authorities LIE.. they dont care about if what they say is true or not.. they just dont want any issues, they'll just play down issues and hope they will just go away. (in the case here.. possibly the new desalination plant which the gov did and put lot of money into could be the cause, it was in that location the first fish deaths happened spreading up the coast line from there).

 

[SilverbladeTE]

Tania
usually the most likely cause for such IS algae, but those can be incredibly toxic, all beaches etc should be shut down, bans on fishing/eating fish/shellfish
it's unlikely for a virus to kill so many *different* species

another possibility is poison run off in a river from a factory or such
note also that poison but more often fertilizers can cause "anoxia", sucking the oxygen right out of the water killing most marine life, and THAT can trigger a very deadly algael bloom as anerobic bacteria/algae are often the most toxic of all
but hey that'd be "big business" and we peons aren't allowed to have them in front of a court for pollution...

actually sometimes the toxins are so bad, or the decomposition of algae can be deadly ON shore, and such should be very seriously avoided
French person died last year form such as the rotting algae created by huge amounts of fertilizer run off into the sea released hydrogen sulphide gas which is actually extremely poisonous

radiation is another possibility but usually that creates terrible sores on the dead as it's hellish death
and Geiger counters cannot pick up alpha emitters like Plutonium

 

[Barry Savage]

In 1991, I was diagnosed with ME by Dr. Simon Wessely at the Maudsley Hospital. Before that I'd received a diagnosis from Dr William Weir at the Royal Free Hospital. At the time of diagnosis I owned two companies,I had employees and family members dependent on me, about 40 persons in all, not counting their dependents, customers etc.

The diagnosis ME was worse than no diagnosis at all. It makes the disability much worse. It creates antipathy in doctors and laymen - to them ME means MALINGERER or MUNCHHAUSEN. My GP has used both these terms. It leaves me no creditable explanation for my behaviour. I am still expected to be able to do what other people can do. It makes me into a recluse.

No treatment has been offered. Treatment has been refused for illnesses obviously not ME - hypertension, for example. The only treatments I ever received has been abuse and derision - no kidding - no exaggeration - and that has discouraged me from seeking medical help for anything. If the purpose was to shut me up, then it worked.

No doctor ever asked me to describe my symptoms, nor was willing to listen to me for five minutes, nor performed any tests that weren't routine eliminations. In fact, nobody ever studied me. I suppose the same applies to all the others.

My life was ruined by the incompetence induced by the illness. I can't hold the medical profession to blame for that. But I do hold them to blame for calling me a liar without proof: I think I deserved an investigation and a fair trial.

Barry Savage

 

[Enid]

I am sorry to hear Barry having had a "run in" with Docs (not my Neurologist) and a psychiatrist myself ten years ago. The situation in the UK and ignorance persists (wilfully it seems) still. It beggars belief that one can be unable to walk, pass out, be unable to speak, sleep mostly and yet be denied recognition and proper (real) medical investigation and aid from those who should know. I do blame the Docs for not keeping abreast with considerable advance in the revelation of pathologies involved even pathogens to look for then and so much more now. And of course as you say, suggesting one is a liar.

 

[ukxmrv]

That's a long time to suffer Barry. I'm sorry that you ended up in front of Wessely at the Maudsley. As I remember it the Royal Free got rid of Willie Weir and he ended up going abroad. There was no ME treatment at the RF until they hired Dr Murphy and she is a PACE / NICE advocate.

I was lucky in that I ended up seeing Dr Jenkins around the same time so I was shielded and helped in many ways.

The 90's as I remember it was the darkest decade for me in London as an ME patient. As the Psych group really took over and moved into position we lost our doctors, the press was constantly insulting, "yuppie flu" insults everywhere.

 

[alex3619]

Hi Barry, I am sorry to read this but it seems like an all-too-common story. ME patients need decent treatment and care, and with current evidence it verges on medical incompetance to deny that treatment. The problem is that most doctors do not know the research, and the guidelines being used are highly distorted. Doctors therefore have the defence tthat they are using established guidelines.

There is a long history of patients wrong diagnosed with psychosomatic illnesses who then died from a purely physical illness. Eliot Slater (1960s) wrote about a few of these.

Things will change if we make them change. The evidence is being denied, but that cannot continue forever. How fast things change is up to us and the scientists and doctors who work to our benefit.

Welcome to Phoenix Rising.

Best wishes, Alex.

 

[Bob]

Hello Barry, and a big welcome to the forum. I'm sorry to hear of your experiences. Unfortunately, your story is all too familiar.

The only treatments I ever received has been abuse and derision - no kidding - no exaggeration - and that has discouraged me from seeking medical help for anything. If the purpose was to shut me up, then it worked.

A few years ago, I was repeatedly visiting my doctor, complaining of a lung problem, and of associated (I thought) malaise, but I wasn't offered any serious investigation into it, or treatment for it. After repeated visits, my doctor obviously had me down as a time waster, and he treated me dismissively and with derision. On one visit, I was once gently ushered out of my doctor's surgery (The doctor opened the door for me to leave his office, before I thought we had finished the consultation.) A year or two later, after changing doctors, it was discovered that the doctor who ushered me out of his surgery had not noticed (or had not acted upon) my clinically under-active thyroid test results. It was the under-active thyroid that was causing my lung problem, and some other symptoms, including additional malaise and fatigue. My lung problem was fixed once the thyroid was treated. This was a clear case of clinical neglect, which could be proven, because my test results were well documented. The doctor was clearly in the wrong.

Whereas my thyroid results were clearly documented, there are no test results for ME. So it is all too easy to give us a label of "time waster", and to treat us dismissively, without any repercussions.

Many of us are familiar with the dismissal and derision that comes with an ME diagnosis. When we first become ill, we feel desperately ill and bewildered, so we visit our doctors frequently, complaining of symptoms of malaise and exhaustion, and we are repeatedly told to come back in a month if we are still ill. The doctors can't easily diagnose us, and then they don't know what to do with us, and so we cause them stress, and eventually we realise that they don't really want to see us, and that they can't or won't help us, so we stop visiting them.

That's my own experience, anyway.

No doctor ever asked me to describe my symptoms, nor was willing to listen to me for five minutes, nor performed any tests that weren't routine eliminations. In fact, nobody ever studied me. I suppose the same applies to all the others.

Yep.

 

[Shell]

Barry Savage Your story is heart breaking and frankly it should be utterly embarrassing to Wessley and all the other docs who have behaved like that.
Munchhausens!!! Really!!! As my dh said to me not that long ago (he works for CAMHS) "no real doctor would dare try and raise the Munchhausens label these days. They would look stupid." If only that was true in adult medicine too.

As you note, I think just about all of us have been through the mill with doctors who give the impression they snored through medschool - if they ever bothered turning up, and have certainly not read anything more challenging than Nuts or the Beanie since they got their shiny new stethoscope (that they can't be arsed to use).

Welcome. to the forum. You are not alone in what you've been through.

 

[user9876]

Munchhausens!!! Really!!! As my dh said to me not that long ago (he works for CAMHS) "no real doctor would dare try and raise the Munchhausens label these days. They would look stupid." If only that was true in adult medicine too.

Its not uncommon for parents of children with ME to be suspected or acused of Munchhausens by proxy either as the child has been ill for too long or because they want tests to be done to rule out other causes of illness. It may be that a doctor raising that label would look stupid but that is because they have renamed it to FII (Fabricated or Induced Illness).

 

[PennyIA]

"no real doctor would dare try and raise the Munchhausens label these days. They would look stupid."

Actually, my nine year old son has spent about two months going to bed directly after school. Compiaining of being tired, sore throat, headache. I've taken him in for routine screening and the MD came back 'depression'. Ok, he's not depressed in any of the 'typical' types of things. He is being treated for anxiety. And I will do my due diligence and when we next see his psychiatrist we will discuss the possibility. But he's not depressed. If anything, he's so much more happy and 'bouyant' than he ever was pre-anxiety treatment.

And, I am hoping against hope that this does pass. And that he isn't about to head down the path I am already on. I really do. But, if he doesn't start to see improvement in the next few weeks? I'm already worried about getting labeled Munchhausens by proxy. As it is, I can't get my regular MD to acknowledge or treat any of my ailments and I feel like he's constantly dismissing them (or screening for cancer - apparently one of his favorite activities; and then dismissing them).

My plan is to do the 23andme with him and if he has half my Methylation defects, we'll at least support that process and see if it makes him a little less prone to other issues.

 

[Enid]

I wonder if it is possible to sue the NHS in the UK - first no tests for hypothyroidism - go to the gym - picked up a year later as severe by luckily another in the same GP practice but too late as ME with all the known symptoms developed, bed bound, unable to walk nor speak, intense pain etc. Though collapsed 4 junior Docs in A & E "diagnosed" a psychiatrist needed.

And in case SW and his crackpots are looking in - my memory, vocabulary, recognitions have now returned after many years (much effort solely on my own part from those who understood the pathologies in ME and best supplements to treat/aid).

 

[Shell]

Honestly this makes me angry. So Munch by Prox gets shown up for the crock it is over those court cases, where mothers had even ended up in prison with this fake dx - and that doc whose name I can't remember, and instead of burying it all and walking away they rename it Fabricated Induced Illness! It's not so much that medics don't learn, it seems they deliberately refuse to learn.
PennyIA it's just wrong that you should have to feel, not only the concern over a sick child, but the fear of some stupid medic coming up with some fake dx.

I still remember the day in the hospital when my daughter had just had her first birthday. She was limp, dry and very very hot, unconscious with an NG tube and a drip. Nothing was working and I sat there praying she wouldn't die.
Some junior doc walked in and said "Bloods are back, it's just a virus."
I stared at him. "What do you mean JUST a virus?" I yelled at him, "Look at her!"
He shrugged a bit awkwardly and said, "Yes well, its a bad virus," and he bolted from the room.

I think their egos are so fragile that if a patient presents them with something too complicated to be fixed with quick prescription they panic and start saying "it's nothing really" even when a 1 year old looks like she isn't going to make it.
She did thank God - and how she did is another story.

 

[David Egan]

the issue is we need all those people focused on their patients and research.. not spending say a quarter of their time fighting what is going on. Its only by good research which is then backed by others, will we ever be free of the mess . Let our researchers focus on their fields.. the research.

You are wrong on several points. The issue is one of credibility and in order to establish credibility we must have letters signed by these doctors and researchers sent into leading newspapers and scientific journals. Once we have credibility for our illness then governments and research bodies will increase research funding into the biological causes of ME/CFS. For 20 years we have had researchers being blocked from getting funding because ME/CFS lacked credibility. The psychiatrists had destroyed the credibility of ME/CFS. And those researchers who got funding received very little money, and their results were mixed. Its all about establishing credibility and using this to get more money for research. ME/CFS receives very little funding compared to other illnesses.

You cannot rely on the existing system, dominated by wessely and his school, which has reduced ME/CFS research funding down to pennies and cash starved research !