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Wessely congratulates himself again

chipmunk1

chipmunk1

Senior Member
Messages
765
Kina said:
I read the title of this thread and thought he was congratulating himself for being nominated for a Darwin Award.
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No the Darwin awards are reserved for the patients who see him to have him treat their ME.
 
Min

Min

Messages
1,387
Location
UK
charles shepherd said:
MEA response sent to the Editor of The Independent

INTENDED FOR PUBLICATION

Re: 'If we treated people with diabetes the way we treat those with depression, there would be an outcry'Independent: December 14, 2014

Sir

Having worked in hospital psychiatry, I know that mental illness can be just as horrible as physical illness and that people with mental illness still face far too many barriers when it comes to obtaining the support and management they deserve.

However, as a doctor working in ME/chronic fatigue syndrome, I cannot agree with the way the cause and classification of this complex neuroimmune disease has been presented in this article as a mental illness.

There is now robust evidence of ME/CFS being triggered by a range of infections and perpetuated by significant abnormalities involving key parts of the the brain, the immune system, the endocrine (hormone producing) system, and mitochondria (energy producing organelles) in skeletal muscle. The most recent biomedical model of ME/CFS causation, presented at the ME/CFS Research Collaborative conference this year, involves infection and immune system activation leading to neuroinflammation in specific parts of the brain which control cognition, fatigue, pain, sleep etc.

ME/CFS is therefore included in the World Health Organisation International Classification of Diseases (ICD10 - G93:3) as a neurological disease - a position fully accepted by the Department of Health.

So the proper place for assessment, diagnosis and management of these patients is in hospital-based units run by physicians who understand the complexities of the illness, and who are supported by a multidisciplinary team of health professionals.

NHS referral services also have a duty to provide care and management for those at the severe (25%) end of the ME/CFS spectrum - people who are bedbound, housebound or wheelchair bound - and for children/adolescents, where this is one of the commonest causes of long term sickness absence from school.

If people with severe diabetes or multiple sclerosis were being denied hospital based services, or domiciliary (home visiting) services, there would be an outcry.

Yet this is what is happening on a daily basis to people with severe ME, where the availability of specialist referral services is even less than that for mental illness (reference).

Consequently, many of these patients enter a state of therapeutic neglect because their GPs do not have the knowledge or experience to manage their condition. The charity sector is left to pick up the pieces.

The scandal surrounding ME/CFS is far worse than the one involving mental illness.

Reference:
McDermott C et al. What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise. BMJ Open, 2014, Jul 1;4 (6) e005083http://www.ncbi.nlm.nih.gov/pubmed/24984956

Dr Charles Shepherd
Hon Medical Adviser, ME Association

Address:
7 Apollo Office Court
Radclive Road
Gawcott
Buckingham MK18 4DF

Website: www.meassociation.org.uk
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It is frightening that McDermott et al have their sights on the severely affected; they want to use the same pseudo treatments - CBT & GET , that made us so very ill in the first place. The medical profession doesn't seem to want to find out what is really wrong and actually treat it.
 
Esther12

Esther12

Senior Member
Messages
13,774
Min said:
It is frightening that McDermott et al have their sights on the severely affected; they want to use the same pseudo treatments - CBT & GET , that made us so very ill in the first place. The medical profession doesn't seem to want to find out what is really wrong and actually treat it.
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Given the nature of specialist services available for ME/CFS, it's not at all surprising the many in the NHS don't think they're worth funding. I'd tend to agree and think that they're often worse than nothing.

Also - The Independent website seems to cause trouble with my PC. Darn it.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
I submitted a very harsh comment. I hope they publish about all the evidence, I hope we all do post the physical evidence and see if they do a follow up w our point of view.
 
Esther12

Esther12

Senior Member
Messages
13,774
lnester7 said:
I submitted a very harsh comment. I hope they publish about all the evidence, I hope we all do post the physical evidence and see if they do a follow up w our point of view.
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I understand people being pissed with Wessely and the tales he spins, but it's probably worth not going too harsh... especially with a British publication I'm afraid: The Queen did Knight him!
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
THis is what I posted:
I hope the writer will do a follow up story to make us justice, do your own research on all the biological evidence. The 30 year abuse has to end. I was evaluated by a neurophycologist which I am willing to share and present to you. I do not have depression and I do have ME. I have low T cells, High B cells and the very ME characteristically Low Natural Killer cells (numbers and Activity). High Inflammatory Cytokines. Proven OI with tilt table test. Viral reactivation due to low NK cells:hh6v, Parvo, coasaxie b2, EBV... I have all tests to back up the immune abnormalities. MRI with white lesions (non MS). Lumbar Puncture and so on. I can prove to you, you can have ME w no depression and so can thousands of patients, which I will make sure you can access documentation to. This kind of statements is moving us backwards, I have been offered treatment (vassocontriction, immune modulators and antivirals for the reactivation. I work full time and have a family and a very good life. I have limitations and all around me have to accommodate my rests / crashes. All I ask is for all those amazing people I have met with ME to have the same access and opportunities to treatment I had, so they can live a somewhat normal life.
 
Min

Min

Messages
1,387
Location
UK
The charity Invest in ME say:

...we do not believe the subject of this media piece is, or ever
was relevant to the treatment of ME and this article serves no more use than any other of the previously staged media stories which pumps up egos and does nothing to educate the public of the real issues with ME.
One more poorly researched and meaningless article to include along with the others of recent years. But they really have nothing much more to offer other than this rehashed waffle.

If we treated people with diabetes the way we treat those with ME, there ought to be an outcry...


...The agents for change that we feel have been, and will be important for the future have no connection with the Independent's fawning and poorly researched time-waster, no connection to the subject of this latest piece and no connection to those who propose that we need to collaborate with those holding false beliefs about this disease.
Actions speak louder than awards.
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M

msf

Senior Member
Messages
3,650
Haha, do you think Wessely stopped seeing patients because he was bored, or out of concern for his own safety? I think he was worried that ME patients were really crazy...
 
Min

Min

Messages
1,387
Location
UK
msf said:
Haha, do you think Wessely stopped seeing patients because he was bored, or out of concern for his own safety? I think he was worried that ME patients were really crazy...
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The appalling abuse we have received as a direct result of the misinformation about our neurological illness spread by him and his colleagues since the 1980s (which is how long I have been ill) is enough to drive anyone crazy.
 
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