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New service for ME is ‘godsend’ (News Article)

Messages
10,157
A pilot service involving a Dunstable team, helping chronic fatigue syndrome patients with care closer to home, has been hailed as “a godsend”.

Specialists in the consultant-led team, based at the Disability Resource Centre in Poynters Road, provide assessments and diagnosis.
And the patients can then receive their care closer to home instead of travelling to hospitals out of the region.
The new county service is said to be “making a real difference” to people’s lives.
More than 1,000 people in Bedfordshire are affected by chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
So far, 68 patients have been referred to the pilot service. Twenty-five of those patients have started individually tailored treatment plans.
And treatments, such as cognitive behaviour therapy and a structured exercise programme, are provided close to the areas in which they live.
Organisers say the treatments are enabling patients to return to everyday activities.
Read the rest of the article here.

OH arghhhhhhhhhhhhhhhhh!
 

Desdinova

Senior Member
Messages
276
Location
USA
Well we did point out how those with mobility and transportation issues couldn't get treatment or participate in study programs. But still I digress ARGHHHHHHHHHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhh..........
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is the honeymoon period. They have been told they can be helped, but treatment has barely begun. They have been convinced its all worth it. Many of them will not have ME. Many will have PVFS and get better within six months to one year, sometimes two years. Those who recover will be spun as miracle cures for the treatment. Those who do not will be dropped and abandoned.

Does anyone recall my parable on how quackery works?
 

aimossy

Senior Member
Messages
1,106
This is the honeymoon period. They have been told they can be helped, but treatment has barely begun. They have been convinced its all worth it. Many of them will not have ME. Many will have PVFS and get better within six months to one year, sometimes two years. Those who recover will be spun as miracle cures for the treatment. Those who do not will be dropped and abandoned.

Does anyone recall my parable on how quackery works?


what is PVFS?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
what is PVFS?

PVFS = Post viral fatigue syndrome, such as occurs in a normal case of Mono or a bad flu. A percentage go on to develop something like ME or something similar, but we still need more research on this despite the Dubbo studies. Post viral fatigue can last six months, sometimes two years, and rarely for five years. It resolves on its own. ME patients possibly get a touch of it when they get a flu or something and then recover some weeks to months later, but this is not certain. There is too much we do not know.

There is another way to look at this though. ME may just be a more severe form of PVFS. We don't know the exact nature of ME versus PVFS. We don't even understand the full mechanisms involved in garden variety post viral fatigue.

PS What Snow Leopard said. ;)
 
Messages
15,786
The quackery usually does seem good at first - patients are reacting positively to someone who understands their symptoms and disability. The practitioners are also validating the experiences of the patients, as well as offering optimism.

But then the bullshiting and torture and brainwashing start. And at some point the patient figures out that, although the practitioners do know about the symptoms, they think they are the result of psychological disorders and/or deconditioning.