UK: Updates to NHS ME/CFS Information may help you get treatments for your PHYSICAL symptoms

livinglighter

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NHS England has been busy at work recently, updating the CFS information, probably in preparation for the NICE ME/CFS guidelines.

ME is now being called neurological.

https://www.england.nhs.uk/ourwork/...ur-work-on-long-term-conditions/neurological/

POTS a neurological dysautonomia condition includes an overview saying it is common in people with CFS.

https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

Here in the UK, you should now be able to bring this info to your doctor to demand a referral to be tested for dysautonomia/POTS. Try and select the consultant you want to see, as I am sure there may be some to avoid. Just make sure you have all your symptoms recorded on your medical records in case your GP is reluctant and you have to make a complaint for a referral. You can ask for a copy of your medical records for free after updating your GP about all your symptoms incase you stopped telling them.

I am being seen on the NHS by a neurologist as I was actually referred to one before being referred by another doctor to the fatigue clinic. I had neurological symptoms before my fatigue became extremely bad, but I received a CFS diagnosis before the Neurologist carried out investigations into MS, etc. I was also mild back then so it was very unclear, as I didn’t have so many symptoms and looked very well. But every time my neurologist reviewed me I’d gotten worse with new symptoms/ significant changes. Now he suspects dysautonomia and has put me forward for autonomic functioning testing, which he was initially reluctant to do once I told him about my CFS diagnosis.

****EDITED*****

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Taken from NHS website

Living with chronic fatigue syndrome (CFS/ME)
Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.
 
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ljimbo423

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ME is now being called neurological.
This seems like a big game changer to me or am I missing something?

From the NHS website-


Neurological conditions
Why is it important?

Long term neurological conditions carry a significant burden to the individual, their families and carers, the NHS, and to society as a whole.


Neurological conditions such as Parkinson’s disease, motor neurone disease, and epilepsy result from damage to the brain, spinal column or peripheral nerves. Some neurological conditions are life threatening, with many severely affecting an individual’s quality of life.


There are over 600 types of neurological conditions, which are broadly categorised into:


  • Sudden onset conditions (e.g. acquired brain injury or spinal cord injury)
  • Intermittent and unpredictable conditions (e.g. epilepsy, ME, certain types of headache, or the early stages of multiple sclerosis)
  • Progressive conditions (e.g. motor neurone disease, Parkinson’s disease, or later stages of multiple sclerosis)
  • Stable neurological conditions (e.g. post-polio syndrome, or cerebral palsy in adults)
 

livinglighter

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I’d say so, an NHS neurologist at the very least should have to find something under their care. No more dismissing patients as mentally ill. Commence the autonomic testing.
I had a standard MRI that didn’t show anything but apparently there are ones carried out with dyes that show more of the issues we suffer from. I’m not sure if that is available on the NHS though. MRS - not available on the NHS shows the low grade brain inflammation found in ME.
 

livinglighter

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So, to clarify then and put it simply, if we contact our Health Centre soon and get an appointment with our GP, exactly what should be be requesting.
1) I’d say first have an appointment with your doctor saying you’d like to update them about all of your symptoms you’ve been suffering from.

If you have a lot to mention you could suggest it will be easier to send them a written list.

GP’s tend to complete notes after the appt and can forget things said or run out of time.

If your GP agrees then send them a document containing your symptoms explaining they also fluctuate in severity and presence. In the body of your email, or in a letter say you’ve noticed you share the same symptoms of POTS, which the NHS says is common in CFS and provide the link and a copy of the text from the website saying it.

2) Give it some time and call your surgery to check if your notes have been updated with the information you sent in and ask for a copy of your full medical records or the period of time you want to see eg. the last 3 months.
You don’t need to speak to your GP about this.

3) During your next appointment with your GP ask to be referred to a neurologist as you have POTS symptoms and it is common in CFS. If you have an ME diagnosis also mention NHS England defines ME as a neurological condition.

You only really need to go about it like that if your GP isn’t very sympathetic/helpful. Otherwise, just tell them about your symptoms and ask them for a referral to a neurologist based on the information you found on the NHS websites.

I’ve spoken to NICE about the lack of information about the illness contributing to doctors treating it as a mental illness. They said there should be more info about ME/CFS published come April to help doctors understand the illness better and advised to hold any patient care complaints until then.
 
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Sledgehammer

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1) I’d say first have an appointment with your doctor saying you’d like to update them about all of your symptoms you’ve been suffering from.

If you have a lot to mention you could suggest it will be easier to send them a written list.

GP’s tend to complete notes after the appt and can forget things said or run out of time.

If your GP agrees then send them a document containing your symptoms explaining they also fluctuate in severity and presence. In the body of your email or in a letter say you’ve noticed you share the same symptoms of POTS which the NHS says is common in CFS and provide the link and a copy of text from the website saying it.

2) Give it some time and call your surgery to check if your notes have been updated with the information you sent in and ask for a copy of your full medical records for the period of time you want to see eg. last 3 months.
You don’t need to speak to your GP about this.

3) During your next appointment with your GP ask to be referred to a neurologist as you have POTS symptoms and it is common in CFS. If you have an ME diagnosis also mention NHS England defines ME as a neurological condition.

You only really need to go about it like that if your GP isn’t very sympathetic/helpful. Otherwise just tell them about your symptoms and ask them for a referral to a neurologist based on the information you found on both NHS websites.

I’ve spoken to NICE about the lack of information about the illness available. They said there should be more info about ME/CFS published come April to help doctors understand the illness better and advised to hold any patient care complaints until then.
I'd rather not waste my time with my GP's because they don't know their A from their E.
All evidence I've given them has been ignored and it's got to a point I'd rather be off their list of patients and look elsewhere.

I asked for my medical records 2 years ago. From the conversation I've had some pretty harsh things written about me and was told to be prepared for that. Now the goal post have been moved in the ME/CFS sufferers favour does that mean we will be taken seriously and the harsh comments about me removed or adjusted to save my practice some face???

So, where do I go from here?

What you've posted makes a lot of sense. Thank you.
Apologies for the rant.
 
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ruben

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Something else I'll just mention too. As I've reached a certain age now I was invited to have a health check at the local health centre. It consisted of a nurse taking cholesterol sample and blood pressure check. Got a letter few weeks later from a doctor saying I have a 10% chance over and above the average of having a cardiovascular problem in the next 10 years. The letter also said a few dietary suggestions(I think I do eat healthy anyway) and the other thing was about some weekly vigorous exercise. I do have ME/CFS on my records, but it just goes to show the indifference towards our plight.
 

livinglighter

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I'd rather not waste my time with my GP's because they don't know their A from their E.
All evidence I've given them has been ignored and it's got to a point I'd rather be off their list of patients and look elswhere.
I totally understand, and I was about to change practices until I saw my medical notes. Your notes usually cause bias when you change to another surgery, so it is a good idea to have things you do not agree with retracted if you can or you amend with your own information in a neutral tone - never emotional.

That way the new surgery have a better idea of why you changed and the difficulties you faced with patient care.

I asked for my medical records 2 years ago. From the conversation I've had some pretty harsh things written about me and was told to be prepared for that. Now the goal post have been moved in the ME/CFS sufferers favour does that mean we will be taken seriously and the harsh comments about me removed or adjusted to save my practice some face???

So, where do I go from here?
Comments can be removed depending on the reason, but sometimes they can't be removed and you can add information stating why you don't agree/ explaining misunderstandings / your version of events, etc.

I'd say to do that before changing GP surgeries.
 

livinglighter

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When I told my neurologist I was about to go private due to the delay in receiving autonomic testing. I was told it cost approx £3,000. I agreed to wait to have it done on the NHS.
It could cost less depending on the testing carried out, I'm not sure. But I'm prepared to get a second opinion privately if necessary.
 
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Pyrrhus

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NHS England has been busy at work recently, updating the CFS information, probably in preparation for the NICE ME/CFS guidelines.

ME is now being called neurological.

https://www.england.nhs.uk/ourwork/...ur-work-on-long-term-conditions/neurological/

POTS a neurological dysautonomia condition includes an overview saying it is common in people with CFS.

https://www.nhs.uk/conditions/postural-tachycardia-syndrome/
Since we're talking about the upcoming new NICE guidelines for ME, expected to be released next month, I thought I'd link to the discussion thread about the draft version of the NICE guidelines that was released late last year:

The new NICE Proposals for the Guidelines are up and SMC gives voice to the Deluded
https://forums.phoenixrising.me/thr...-up-and-smc-gives-voice-to-the-deluded.81971/
 

Sledgehammer

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I totally understand, and I was about to change practices until I saw my medical notes. Your notes usually cause bias when you change to another surgery, so it is a good idea to have things you do not agree with retracted if you can or you amend with your own information in a neutral tone - never emotional.

That way the new surgery have a better idea of why you changed and the difficulties you faced with patient care.

Comments can be removed depending on the reason, but sometimes they can't be removed and you can add information stating why you don't agree/ explaining misunderstandings / your version of events, etc.

I'd say to do that before changing GP surgeries.
Thanks,

It looks as though bias runs from one GP to another since I rarely see the same GP twice.
We have many newcomers to our surgery, some are only there to cover holidays or fill the gap.
I still don't have my medical records. There is always an excuse that their is an adminstration problem or something to that effect. What are they achieving by doing this I wonder.
I'm never emotional and always straight to the point. Never rude.

Several years ago and feeling very fed up I went to another surgery only to be told this.
"What makes you think we'll treat you any differently".
I decided to stay with my current lot.

I'm going to push for my records again since the surgery has remained open since Covid arrived.

Thanks again, you've been very helpful.