ME Trust (UK based charity)

[godlovesatrier]

Has anyone heard of the ME Trust in the UK? The website is very comprehensive and the testimonials are legitimate. It was setup by a lady who made a full recovery from her ME.

https://metrust.org.uk/aboutus/the-story-so-far/

I've briefly spoken to someone on Twitter who did very well with them. Some people seem to go up a few energy score points. Others seem to become 70% better.

The site says they are incredibly compassionate with a focus on physiological as well as pyschological well being. I think they are also aware that this disease is similar to cancer for the most severe. In the sense that there is a grieving process. They seem to tackle this through chaplaincy and general good medical care. Listening to the patient etc.

I just wondered if anyone had been to them and what the benefit was.

 

[gbells]

It looks like they are pushing the debunked CBT and graded exercise physical therapy (PACER).
https://metrust.org.uk/how-we-help/the-clinical-team/

It is sad how the UK is still following the debunked mental disease propaganda about ME that originated from the USA's National Institutes of Health.

 

[godlovesatrier]

Hey @gbells I thought this too. However I've spoken to a lady on Twitter who 100% refutes that saying that they do not do this. But you know I'm not sure what to believe. One lady mentions the lightning process got her significantly better. Which doesn't make any sense because most of us long term with an ME diagnosis have viral symptoms and acute flares. In my case I even have the acute blood tests to prove it.

I'm hoping someone here has tried them.

It's disgusting here. Honestly we are a joke of a country in so many ways now. Total lack of innovation and general medical forward thinking. I wouldn't be surprised if there's been no forward movement since the 80s. I think we are a world leader in genetics data and implementation to the country's population. But that is literally all I can think of. NICE makes things a lot worse.

 

[andyguitar]

I just wondered if anyone had been to them and what the benefit was.

I know a bit about this charity. They have campaigned to have GET and CBT removed from the Government guidlines as a treatment for me/cfs. They do not support the idea that me/cfs is a psychological disorder. Never have. One of the patrons is Countess Mar, a former sufferer of who has spent her political career getting a better deal for patients.

 

[godlovesatrier]

Thanks Andy @andyguitar much appreciated.

 

[Art Vandelay]

One lady mentions the lightning process got her significantly better.

I would stay well clear of anyone recommending the Lightning Process: https://me-pedia.org/wiki/Lightning_Process

I have read some decent reviews of Dr Worthley at the ME Trust.

 

[Blue Jay]

One of the patrons is Countess Mar, a former sufferer of who has spent her political career getting a better deal for patients.

If the Countess of Mar is involved I'd say it can only be good. She has stood in our corner so many times during her time in the House of Lords.

 

[gbells]

So why are there physiotherapists and mental health counselors on staff? Confusing.

 

[godlovesatrier]

I was confused by that too. Although I don't doubt there ability to be empathetic and treat us with decency.

 

[gbells]

The patient stories talk about Neuro Linguistic Programming (???), emotional support and PT to try to get severe bedbound ME patients to overcome severe illness behavior and gain some function. I don't see any specific treatments so it looks rather limited.

 

[andyguitar]

So why are there physiotherapists and mental health counselors on staff? Confusing.

Because some patients require those services.

. I don't see any specific treatments so it looks rather limited.

They dont list specific treatments because not all patients are the same. One treatment that Dr Worthley has used (and might still use) is the drug Nimodipine. This is a calcium channel blocker that has the effect of dilating blood vessels in the brain. Other Docs also use it. There are some positive reports regarding it's use for me/cfs. Also used for migraine.