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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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


This leaflet is for young adults with CFS/ME and their parents. It aims to help you understand the role of the physiotherapist and how they can help you with the symptoms of your chronic fatigue.

How does physiotherapy help people with CFS/ME?
The aim of physiotherapy is to provide support and advice on how to manage your symptoms of chronic fatigue, so that you can start getting back to doing all the things you used to enjoy, such as meeting up with your friends, going on sleep overs, and playing sport again. Physiotherapy aims to help people make changes that make you feel physically better. It will also look at ways of maintaining these changes and dealing with any setbacks.
For all activities you need a certain level of strength, fitness, and endurance. Young people with CFS/ME can often struggle to maintain their usual levels of activities and exercise. Their strength and fitness are often reduced and they find taking part in their day to day activities tiring. Routine is the key to success and eliminating any boom and bust pattern is important to kick start this process.
Click to expand...
There are different types of activity that will be discussed.
• General activities are things you do as part of daily life, such as going to school and shopping, walking around the house, doing chores (taking out the bins or tidying your room), and seeing friends.
• 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.
• Mental activities refers to an activity that uses concentration and memory, for example school work, being on your iPad and your phone!
Click to expand...

Feeling strange or having different symptoms is normal when you start a new activity or
exercise. Your skin may go red, you may feel tired, your body and muscles may feel like jelly
or stiff when you finish. This is quite normal. Delayed Onset Muscle Soreness (DOMS) is a
common effect for all people when they increase their exercise or activity level. As with all
illnesses, physical and emotional factors affect recovery.
Click to expand...

@PhysiosforME
 
Last edited by a moderator:
Feeling strange or having different symptoms is normal when you start a new activity or exercise
Click to expand...
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.
 
rvallee said:
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.
Click to expand...
Sadly, quite a number of pwIBS will have heard their symptoms are completely normal. I'm pretty sure I've mentioned this patient I met who had had diarrhea for five years which his GP had kept telling him would go away by itself. And I'm sure the GP thought is did as obviously one stops bringing it up when there is zero response.
 
rvallee said:
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.
Click to expand...

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.
 
:jawdrop: 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.
 

Attachments

  • IMG_20220628_181624393.jpg
    IMG_20220628_181624393.jpg
    975.4 KB · Views: 15
rvallee said:
The authorities wrote that. Any report would be sent to... them. Tiny glitch in the system.
Click to expand...

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.
 
DokaGirl said:
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.
Click to expand...

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.
 
Ali said:
:jawdrop: 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.
Click to expand...

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?
 
Jonathan Edwards said:
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.
Click to expand...

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.
 
Last edited:
"• 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."
MEMarge said:
This is great @Sly Saint, just the type of info needed to show the DHSC that clinics are ignoring NICE GDL
Click to expand...

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
 
DokaGirl said:
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.
Click to expand...

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?
 
You must log in or register to reply here.
Back
Top Bottom