Has anyone seen a cfs specialist in the UK particularly around the midlands area. I am looking for someone who might know what tests to run, treatments etc. In particular my symptons are fatigue, general feeling of illness, digestive problems, nausea, thirst, muscle ache, thirst, pale, low blood pressure (making me light headed and dizzy). I have found improvements by seeing a nutrionilist and also increasing salt in my diet?! Any information would be greatly appreciated.
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CFS Specialist in the UK
- Thread starter Hazel1862
- Start date
charles shepherd
Senior Member
- Messages
- 2,239
If you want to go down the NHS route here is a list of all the UK hospital based referral services where you could be clinically assessed to see if you have ME/CFS:
http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/
If you want feedback on local NHS services for people with ME/CFS in the Midlands you could post a message on our Facebook page:
https://www.facebook.com/pages/ME-Association/171411469583186
You can ask your GP to refer you outside your local are if there is a specific NHS specialist that you would like to see
http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/
If you want feedback on local NHS services for people with ME/CFS in the Midlands you could post a message on our Facebook page:
https://www.facebook.com/pages/ME-Association/171411469583186
You can ask your GP to refer you outside your local are if there is a specific NHS specialist that you would like to see
Uno
Senior Member
- Messages
- 157
- Location
- Brighton, United Kingdom
Where do you live Hazel? I live in Sussex and know a few doctors who can help. I run a charity for ME in the UK so please PM me if you want more information.
Research 1st
Severe ME, POTS & MCAS.
- Messages
- 768
Need to let people know this so they aren't disappointed with thinking Dr Newton is some kind of angel, who can save the day if you have CFS alone with no much else. (Desperate people naturally hang onto the last chance, and pin hopes on doctors who believe in ME, to 'save' them). She may well save the day for some if you're used to total neglect, but likely only if you have ME or POTS and can have abnormal test results than get you a new diagnosis and medications that can help you. A problem is, lots of people with ME think they have CFS, and lots of people with CFS think they have ME. Now add POTS in with that. Lots of patients, hoping all sorts of things, who've never been tested for a single abnormality, maybe over decades. Naturally some people are going to be sorely disappointed in not having any 'proof' after seeing a specialist doctor who does tests, and does believe them. I'd keep that in mind if forking out a fortune in ambulance fees having to travel hundreds of miles across the country.
If you have O.I (Orthostatic Intolerance) a core feature of ME and POTS (not CFS/ME by the way according to the NHS), then I would be reasonably hopeful, Dr Newton may help you get this diagnosed and maybe give you medications to hep you. However: Dr Newton isn't a hands on CFS/ME specialist in a CFS clinic. She works in the Falls & Syncope clinic to see patients at the RVI in Newcastle Hospital along with other doctors there and the nurses who do the tests. Her main contact with 'CFS/ME' community is at a research level. Keep that in mind.
The RVI is an excellent modern hospital. It can diagnose people there for POTS and other autonomic problems with a TILT test in the syncope department. (POTS affects approx 1 in 4 people diagnosed with 'CFS' according to Dr Newton's research). So you can see her only for CFS/ME, unofficially, as it's unofficial that ME leads to POTS and other neuro cardiac problems associated to O.I. NHS doesn't even admit this on their public website, called NHS choices. (CFS doesn't refer to POTS and POTS doesn't refer to ME - on the NHS choices website). This is embarrassing for the NHS to be recommending CBT/GE to the public for 'CFS/ME', then risk adding that POTS is a neuro problem and you might have that too - hence CBT/GE wouldn't work, hence POTS is missing from the NHS CFS website. Such cowards.
In Newcastle, officially for 'CFS' you'd get a referral to the 'CFS/ME' service to see Dr Spickett (Immunologist who then refers on to psych CFS service for....you guessed it, CBT/GE) .Instead, ask for a referral to the falls and syncope department at the RVI - then you can see Dr Newton, after a wait.
The truth is, there are no 'CFS/ME' specialists services in the UK for neuro ME and if you have proven neurological problems with ME, you'd get pulled out the 'CFS/ME' services and end up seeing a neurologist!. How ironic. This is why:
In the NHS, the 'CFS specialist staff' are simply nurses or OT's (occupational therapists) who read a few pages of A4 about how CBT and OT help you cope with 'fatigue' and CBT brainwashing can alter patients 'faulty illness beliefs' about having a neurological disease that affects muscles. These 'specialist' OT's, or physio's know nothing about ME patients physical damage as they aren't medically trained doctors.
Their gap in knowledge in adequately communicating with the patient is huge. A 'CFS/ME' specialist nurse won't know about POTS, blood volume, allergies, arthritis, seizures, about growth hormone, nutritional deficiencies - as being hallmark symptoms of many with ME. They aren't told to learn, they are told to tell you that symptoms are mind-body and are 'managed' with CBT, which is BS, unless you're mentally ill and your own unhelpful behaviour is making your illness worse.
Very few people I've ever met are mentally ill, except psychiatrists. In fact, ME patients are generally happy as can be in the circumstances, intelligent, sensible, common sense types who know exactly how to manage their lives, and don't need an untrained 'CFS/ME' specialist to tell them they should keep an activity diary and 'pace' their lives - child like treatment for grown women and men.
I wouldn't touch any CFS specialist service with a barge pole, the exception being seeing Dr Bansal (immunologist) in London, even he thinks that stress is linked and goes on some weird journey about mind body on the hospitals NHS website: (Scroll down to read all the sub chapters). This is the best it gets in the NHS, there are far worse hospitals and doctors to see in a 'CFS/ME' specialist service in the UK.
https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome
NB: The lack of genuine CFS/ME specialists services in the UK, is no fault of doctors or nurses at CFS/ME 'specialist clinics'. It's caused by NICE advising the Department of Health with their unfit for purpose NICE guidelines on CFS/ME, to go with a public disinformation campaign, that CBT/GE is the only 'evidence based treatment', when the 'evidence base' (PACE) shows CBT/Activity fails, even when based on F48.0 Psychiatric chronic fatigue, not G93.3, ME. A stupendous own goal, legally. Hence the PACE trial advocates need new underwear as they've promoted a therapy, with no evidence base, claiming that the evidence based prove them right when it proved them wrong. Woops!
This is slight problem if tens of millions are now infected since the 1950's inside the CFS/ME is an infection/autoimmune disease/infectious component within genetic relatives. With CFS/ME this can be concealed from the general public (no tests necessary), but when a pathogen is found, especially if neuroinvasive (retrovirus, bacteria, viral) it will be. Then NICE will get sued for billions of pounds, as every well healed middle class ME patients family (people with money), will demand compensation for being injured physically (uncontrolled disease process) and mentally (break up of family due to the disbelief biopsychosocial theory of CFS causes families: divorce, suicide etc.) when the 'therapy' was proven a lie.
If you have O.I (Orthostatic Intolerance) a core feature of ME and POTS (not CFS/ME by the way according to the NHS), then I would be reasonably hopeful, Dr Newton may help you get this diagnosed and maybe give you medications to hep you. However: Dr Newton isn't a hands on CFS/ME specialist in a CFS clinic. She works in the Falls & Syncope clinic to see patients at the RVI in Newcastle Hospital along with other doctors there and the nurses who do the tests. Her main contact with 'CFS/ME' community is at a research level. Keep that in mind.
The RVI is an excellent modern hospital. It can diagnose people there for POTS and other autonomic problems with a TILT test in the syncope department. (POTS affects approx 1 in 4 people diagnosed with 'CFS' according to Dr Newton's research). So you can see her only for CFS/ME, unofficially, as it's unofficial that ME leads to POTS and other neuro cardiac problems associated to O.I. NHS doesn't even admit this on their public website, called NHS choices. (CFS doesn't refer to POTS and POTS doesn't refer to ME - on the NHS choices website). This is embarrassing for the NHS to be recommending CBT/GE to the public for 'CFS/ME', then risk adding that POTS is a neuro problem and you might have that too - hence CBT/GE wouldn't work, hence POTS is missing from the NHS CFS website. Such cowards.
In Newcastle, officially for 'CFS' you'd get a referral to the 'CFS/ME' service to see Dr Spickett (Immunologist who then refers on to psych CFS service for....you guessed it, CBT/GE) .Instead, ask for a referral to the falls and syncope department at the RVI - then you can see Dr Newton, after a wait.
The truth is, there are no 'CFS/ME' specialists services in the UK for neuro ME and if you have proven neurological problems with ME, you'd get pulled out the 'CFS/ME' services and end up seeing a neurologist!. How ironic. This is why:
In the NHS, the 'CFS specialist staff' are simply nurses or OT's (occupational therapists) who read a few pages of A4 about how CBT and OT help you cope with 'fatigue' and CBT brainwashing can alter patients 'faulty illness beliefs' about having a neurological disease that affects muscles. These 'specialist' OT's, or physio's know nothing about ME patients physical damage as they aren't medically trained doctors.
Their gap in knowledge in adequately communicating with the patient is huge. A 'CFS/ME' specialist nurse won't know about POTS, blood volume, allergies, arthritis, seizures, about growth hormone, nutritional deficiencies - as being hallmark symptoms of many with ME. They aren't told to learn, they are told to tell you that symptoms are mind-body and are 'managed' with CBT, which is BS, unless you're mentally ill and your own unhelpful behaviour is making your illness worse.
Very few people I've ever met are mentally ill, except psychiatrists. In fact, ME patients are generally happy as can be in the circumstances, intelligent, sensible, common sense types who know exactly how to manage their lives, and don't need an untrained 'CFS/ME' specialist to tell them they should keep an activity diary and 'pace' their lives - child like treatment for grown women and men.
I wouldn't touch any CFS specialist service with a barge pole, the exception being seeing Dr Bansal (immunologist) in London, even he thinks that stress is linked and goes on some weird journey about mind body on the hospitals NHS website: (Scroll down to read all the sub chapters). This is the best it gets in the NHS, there are far worse hospitals and doctors to see in a 'CFS/ME' specialist service in the UK.
https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome
NB: The lack of genuine CFS/ME specialists services in the UK, is no fault of doctors or nurses at CFS/ME 'specialist clinics'. It's caused by NICE advising the Department of Health with their unfit for purpose NICE guidelines on CFS/ME, to go with a public disinformation campaign, that CBT/GE is the only 'evidence based treatment', when the 'evidence base' (PACE) shows CBT/Activity fails, even when based on F48.0 Psychiatric chronic fatigue, not G93.3, ME. A stupendous own goal, legally. Hence the PACE trial advocates need new underwear as they've promoted a therapy, with no evidence base, claiming that the evidence based prove them right when it proved them wrong. Woops!
This is slight problem if tens of millions are now infected since the 1950's inside the CFS/ME is an infection/autoimmune disease/infectious component within genetic relatives. With CFS/ME this can be concealed from the general public (no tests necessary), but when a pathogen is found, especially if neuroinvasive (retrovirus, bacteria, viral) it will be. Then NICE will get sued for billions of pounds, as every well healed middle class ME patients family (people with money), will demand compensation for being injured physically (uncontrolled disease process) and mentally (break up of family due to the disbelief biopsychosocial theory of CFS causes families: divorce, suicide etc.) when the 'therapy' was proven a lie.