The Times 9th August 2023: NHS told to stop blaming ME Patients for being ill

[Countrygirl]

 

[Countrygirl]

The Delivery Plan is being released at 2 pm today.

 

[ruben]

Yes, I just bought "The Times". Here in Suffolk where I live we have an ME/CFS services place which I'm attending soon. Don't suppose anything will change by then though. But it's a start.

 

[Osaca]

Does someone have a very short breakdown of who was part of these working groups, what the eventual plans and outcome might be and whether there'll be interference from the FND groups?

 

[Countrygirl]

Here is the government's survey that accompanied the Delivery Plan for us to fill in.


https://onedrive.live.com/view.aspx...XLSC73MXm66B78ur76zPEwzQCuGkeAUfjHzzOltt2ddQc

 

[Countrygirl]

Does someone have a very short breakdown of who was part of these working groups, what the eventual plans and outcome might be and whether there'll be interference from the FND groups?

I was one, @Oscar220 and a number of other patients attended various groups.

The document is a rather sanitised version of our contributions but when on a battlefield you do need to leave an escape route for your enemies so you can ultimately take control of the field, I guess.

 

[Abha]

Here is the government's survey that accompanied the Delivery Plan for us to fill in.


https://onedrive.live.com/view.aspx?resid=CB2C4502C6DE2B56!1937&ithint=file,docx&authkey=!AAYKJmsBQ2FzgTU&fbclid=IwAR1NfHCz4ubp9bXLSC73MXm66B78ur76zPEwzQCuGkeAUfjHzzOltt2ddQc

Hi Countrygirl,
Thanks for posting "The Times" article on ME/CFS..

Re Survey and Delivery Plan do you know if that is for GB only(not Northern Ireland?)?
Thanking you,

 

[Osaca]

Read through the comments and look at the upvoted comments made by UK doctors here:

https://www.reddit.com/r/doctorsUK/comments/15mpc2o

 

[Viala]

Read through the comments and look at the upvoted comments made by UK doctors here:

This comment from reddit is a gem, comparing detrimental medical approach in CFS to similar one in diabetes:

'The NHS is known for uniquely bad treatment of CFS patient, including sometimes forcing them to go through exercise regimes (proven to cause deterioration) to get care and benefits. (...)
This is akin to trying to treat type 1 diabetics with "gradual glucose reconditioning".'

 

[BrightCandle]

The response of doctors to this shows training isn't going to be enough. It remains my belief that unless disciplinaey action is taken against abusive doctors then no progress will be made. The existing complaints system of the NHS does not work for ME patients, basic healthcare is denied to us due to systemic prejudice. This is the reality, we see it in doctors ignorant and prejudiced comments and (lack of) treatment in appointments every day. The DHSC is failing ME and long Covid patients until the law is enforced.

 

[hapl808]

The response of doctors to this shows training isn't going to be enough.

This. I really don't know how you change a whole culture that has learned to be dismissive of anyone who questions the gospel, convinced of their own infallibility, etc. You can maybe teach them one new thing, but you can't teach them a different attitude. It's part of their whole identity.

If only there were a pandemic that just targeted doctors. Then we could all say, "Well, most of us will be fine! The vulnerable physicians should take precautions, but we're gonna live our lives! Now get back to work!"

The level of disdain that doctors have for most chronic illness patients is pretty mind numbing. On my good days, I believe it's because they genuinely want to help and can't admit they are unable, so the only solution that keeps their identity intact is to blame the patient for faking their symptoms.

 

[gbells]

If only there were a pandemic that just targeted doctors. Then we could all say, "Well, most of us will be fine! The vulnerable physicians should take precautions, but we're gonna live our lives! Now get back to work!"

Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.

 

[hapl808]

Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.

Maybe it's different in the US - I've never gotten care in the UK. But in 25 years of seeing doctors, the only ones who ever mentioned CFS were naturopaths, CFS or lyme specialists, etc. Have never had a single physician suggest it as a meaningful diagnosis. The 'best' I got was a neurologist who said he believed that things like CFS or post-treatment lyme were real, but he had nothing to offer on how to treat them.

The first attempts at actual treatment I have received from a doctor who takes insurance is directly from Long Covid changes.

(And I've been fortunate enough to see top doctors at major academic institutions.)

 

[gbells]

Have never had a single physician suggest it as a meaningful diagnosis. The 'best' I got was a neurologist who said he believed that things like CFS or post-treatment lyme were real, but he had nothing to offer on how to treat them.

I'll never forget the PCP MD who once told me when I questioned him whether he would support my CFS disability before the SSA, "I don't believe that disability exists, everyone can work in some capacity." After harshly attacking his position I quit care immediately. That was on the first visit. Always ask your doc if they are supportive of CFS disability. If they answer no then get rid of them.

My CFS was diagnosed by an integrative MD. He didn't have any effective treatments either but at least he understood that it is disabling.

 

[Galixie]

I question this:

Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.

As the pandemic has made abundantly clear, just because a government agency has proclaimed something, it does not mean that all practicing physicians will adopt that same stance.

My experience, in the US, is that doctor attitudes have not changed at all. Many still see it as "Yuppy Flu" and dismiss it entirely. At best there are doctors who acknowledge that some people have autoimmune conditions that make them prone to frequent illness. They've never even heard of an overactive immune system that results in fewer colds and flus but a more constant general malaise due to the immune system dysfunctioning.

Many doctors are reluctant to acknowledge that long-covid is real and, of the ones that do, most of them deny that it has any relation to ME/CFS. (Likely meaning that any advances related to Long Covid won't even be researched for ME/CFS.)

And then there are the doctors who have no personal experience of fatigue to draw from, who think you can just push through. They are genuinely lacking any sympathy due to their lack of experience. How, exactly, does one fix that problem? (I'm reminded of the dog experiment in the 1920's by Murphy, Minot, and Whipple, but bleeding people until their anemic seems rather extreme...)

 

[ruben]

Yes, a lot of this is like having a Conservative MP and you get 30 minutes if you're lucky to convert them to becoming a left-winger. You can be pretty certain you won't be able to achieve it.