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Billionaire's whole family is struck with Lyme disease

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Yogi

Senior Member
Messages
1,132
John Caudwell raising awareness of his family and himself being diagnosed with Lyme. He is doing great advocacy work!

A number of references to Lyme being mis-diagnosed with ME.

http://www.bbc.co.uk/programmes/b06d9vyv

http://www.bbc.co.uk/programmes/p033w8cm

The times that ME/CFS and Lyme is discussed on Radio 5 Live link above:

9m - John Caudwell main interview and refers to misdiagnosis and "doctor says you got ME, Fibromyalgia etc..." and himself had ECG shown arrhythmia and getting symptoms of mild ME symptoms 3/4 years ago.
41m - Conversation with London School Hygiene Tropical Medicine doc
1h 07m - Reading out messages
1h 28m - Caller said NHS disputed private sector positive Lyme disease test and diagnosed with CFS instead.
2h 20m - Caller tested positively in private sector test and getting better but was ridiculed by NHS doctors.
 
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Yogi

Senior Member
Messages
1,132
There are so many people being mis-diagnosed with ME or CFS who actually have Lyme.

This has been covered here before but how many people have been tested here for Lyme disease? Does anyone know of where the family were tested as he does not mention any names of the professors or hospital?
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Yogi said:
John Caudwell raising awareness of his family and himself being diagnosed with Lyme. He is doing great advocacy work!

A number of references to Lyme being mis-diagnosed with ME.

http://www.bbc.co.uk/programmes/b06d9vyv

http://www.bbc.co.uk/programmes/p033w8cm
Click to expand...
My goodness, that's powerful testimony. The long version is an absolute MUST listen for all ME patients. I think we should publicise this widely. John said he has developed mild ME-like symptoms himself, along with heart problems. His son is still in a very poor and weak state, with a whole load of problematic complications. It's seems that they've only known about the Lyme disease for a matter of weeks. He's recommending a £100 test from Germany because he says it's more reliable than the UK tests, but he didn't give further details.
 
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duncan

Senior Member
Messages
2,240
If he and his family are not 2T compliant, this could get interesting.

He has enough money to draw awareness to deficiencies in current tests. If mainstream concerns try to discredit him and/or those helping his fight with Lyme, he has enough money to bring rapid and meaningful awareness to the appalling politics that have petrified Lyme progress for 25 years or more.

That aside, I feel for what must be a terrible fear gripping him, since his entire family appears to be infected.
 
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duncan

Senior Member
Messages
2,240
Even if he or any members of his family are 2T positive, this will likely prove a nightmare for mainstream Lyme. It's not just diagnostics that are screwed up. Treatment for up to 20% of acute cases - and God knows what portion of late stage victims - is a very dicey prospect, sometimes a grim one.

The failures of the current Lyme system could soon be on global display on a grand scale. This gentleman could simply out spend the mainstream Lyme PR machine.

It wouldn't be easy. But it might be interesting.

I suspect there will be a concerted effort to convince him that the diagnoses are in error. If he is convinced, the problem dissipates.
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Powerful testimony from John Caudwell on the TV programme and on Radio 5 live. This man is not going to stop and he is not going to go away. What I love most is that whenever Phillip Schofield brings it back to Johns family and the money John opens out the discussion to include ALL people suffering from Lyme and chronic diseases who are being let down. He clearly says it is the health services job, not his to take this on and he will keep fighting until they do.
 
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Yogi

Senior Member
Messages
1,132
Just watched the ITV This Morning he is absolutely great and determined to change things. I love the comment about paying £250,000,000 in tax in the last few years and the useless NHS would not treat his son for Lyme but mis-diagnose him with mental illness. Sounds familiar to us ME patients? He has spent hundreds of thousands of pounds privately. He is also such a nice guy and his thoughts are with the thousands who don't have such private funding.The rich and famous have the power to change things and I think he will make such a difference.

On the facebook page that Bob provided a link to so many stories refer to Lyme being misdiagnosed as ME and he is asking for stories to be sent in and his PA is collecting them for his charity that he is setting up. Would be good for someone on facebook or twitter to inform him of all the shenanigans that certain UK NHS psychiatrists are deliberately mis-diagnosing ME/CFS patients as mental illnesses and preventing further tests or treatments.
 
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Yogi

Senior Member
Messages
1,132
http://www.independent.co.uk/news/p...rnment-to-research-lyme-disease-a6672826.html

"Mr Caudwell said circumstantial evidence had led him to suspect that a whole host of chronic conditions, including ME and Parkinson’s disease might be linked to Lyme disease."

"His comments, however, appear to go against much current medical thinking – the Government body Public Health England told The Independent: “There is no scientific evidence to support the suggestion that Lyme disease is caused by anything other than ticks. There is no scientific evidence that Lyme disease causes ME, Alzheimer’s or Parkinson’s disease.”

"Mr Caudwell added: “ME could also easily be a symptom of Lyme Disease. Lyme disease wreaks havoc with the body. It can affect the immune system. I am not saying that Lyme disease has been proved to cause or induce these illnesses. We don’t know for sure. That’s why the research needs to be done.”

"Mr Caudwell urged the Government to commission a relatively cheap study involving about 50 GPs testing patients, including those with ME, Parkinson’s and Alzheimer’s, for Lyme disease “when there is any chance whatsoever that they might have it.”
 
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Dufresne

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
While actors and artists can be brushed aside, it's somewhat trickier when it comes to a billionaire businessman, and the largest taxpayer in the UK. Huge money, credibility, and the passion of a patriarch with a sickened family. I'm going to enjoy every last bit of this.

What I'd like to see is a validation of Sapi's culturing method. That's the one that would do it.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
He's already making huge waves in the media. The medical establishment will take time to convince and to change but he's got money and status, and he's not going to give up. I wish we had such an advocate for ME/CFS and fibro but I'm pleased that the Lyme community has such an advocate. He's also got money that he can invest in research i.e. investigating co-infections and better diagnostic tests. So this should be an interesting time for Lyme.
 
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duncan

Senior Member
Messages
2,240
They lost me at "So what IS the truth about the Lyme disease 'epidemic'?"

ETA: I was taught that journalists should approach each subject from a vantage of disinterest. Either that, or you throw yourself fully and overtly and unabashedly into the story, similar to Gonzo journalism. This story...well, this story for me seems stuck somewhere in between, like it doesn't quite know yet what it wants to be when it grows up.

Here's another rule that I was taught many years ago: Report both sides to a story. I'd add a corollary to that: Don't employ grammatical gimmicks to help influence readers; let the facts you report do that.
 
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