United Kingdom: NHS East Kent Hospitals University - CFS/ME

Chronic Fatigue Syndrome (CFS) / Myalgic Encephalopathy (ME) and Physiotherapy: Information leaflet

pdf link here:
https://www.ekhuft.nhs.uk/patients-...ts-childrens-physiotherapy/?entryid103=440305

@PhysiosforME

 

"We who make money selling physiotherapy services have a hammer. ME looks like a nice profitable nail."

 

It's really not. No one thinks of being sore as a symptom and the fatigue after exercise, at least to me and many people, is very pleasant, satisfying.

This is as absurd as saying that it's normal to feel bloated and have severe abdominal pain with explosive diarrhea after eating. It's not. To claim otherwise is blatant lying.

 

This surface understanding of ME is discouraging. Especially since the changes to NHS info.

It is concerning that these hospital staff are not following NHS guidance on ME.

 

Agreed. The dismissal and omission of serious symptom reactions to exertion is out of date and out of touch to say the least. This needs to be reported to authorities.

 

Date of production: March 2022

Where have they been?!!

This is exactly the sort of misleading crap in pamphlets I was given at Oxford back in 2016/2017. Sadly I trusted them & Graded Exercise my way into Ill health retirement, bedbound + wheelchair.

 

My response to exertion, is to feel faint, and have burning muscle pain within a few minutes. I also feel weaker, become uncoordinated and brain foggy.

I guess that's a "normal" reaction to exercise/exertion.

 

The authorities wrote that. Any report would be sent to... them. Tiny glitch in the system.

 

Thanks for your reply @rvallee.

Granted, the "authorities" are the physiotherapists at that hospital. However, I would hope there is some monitoring function by NHS, or other higher level organization.

Although, having experienced numerous problems with the Canadian health care system, I am doubtful that other health care systems would be any more effective in rooting out misinformed, inappropriate treatment.

 

Such things are a thing of the past, I fear. Everyone at the top has lost the plot since the introduction of the 'internal market'. Fortunately there are one or two people like Peter Barry and Ilora Finlay, who care, but beyond that it is mostly self-driving robots.

 

Would you be able to message me a rough outline of your experience at the Oxford CFS clinic?
This is exactly the kind of experience that needs to be fed in to the current DHSC meetings.

I thought exactly the same about the date of production, also not due for update until 2025?

 

This is great @Sly Saint, just the type of info needed to show the DHSC that clinics are ignoring NICE GDL

 

Oh boy. Well, it seems to be pretty much the same here in Canada.

ETA: I googled "internal market". The European/Common market came up. But do you mean Brexit? Maybe not supposed to get into this political stuff. At any rate, it's all a mess everywhere.

 

https://en.m.wikipedia.org/wiki/NHS_internal_market

 

"• Aerobic exercise is an activity that increases your heart rate and makes you feel breathless.
This is a good thing! Research has shown that a gradual increase in this type of activity can help people recover from CFS. Aerobic exercise includes swimming, cycling, fast walking, or jogging as well as some light competitive sports."

I suppose patients/those who represent patients could raise this with the APPGs [M/CFS & Long Covid (LC) - since those with LC are likely to be subject to the same approach] and Sajid Javid [Minister/Secretary of State for Health & Social Care - who actually does care]. Another thing, I've suggested in the past, is that surely using unevidenced treatments leaves the Health Trust open to claims for compensation - perhaps highlighting that risk to the Health Trust will highlight a potential financial/reputational risk ---- nothing focuses the minds of senior managers more than thoughts of losing their "performance bonus" through foreseeable legal claims/investigations into the use of unevidenced treatments ----

@adambeyoncelowe

 

Thanks very much @Andy.

 

I represent our local ME support group at one of the County’s Partnership Boards
[e.g.https://www.gloucestershire.gov.uk/health-and-social-care/disabilities/partnership-boards/]

I learned today that the Health & Care NHS Foundation Trust has a “NICE Guidance Manager”. They are responsible for ensuring that NICE Guidance is followed and, I believe, East Kent Hospitals NHS should be challenged on this “information” leaflet.

Has anyone referred it to ForwardME or MEAssociation? - I can message them, if that is required altho @PhysiosforME may do this?

 

Thank you @It's M.E. Linda.

 

https://twitter.com/user/status/1542459852764708866