UK consultants provided for NHS- CFS services ?

[Emmarose47]

Hi I'm.in the west country of the UK ..
I am under a CFS service which is in an NHS hospital ... It doesn't have any medical input ..
Does anyone have any knowledge / experience of such services in other parts of the country having medical input for patients ?
I wonder if I'm missing our purely due to my postcode ..

 

[Treeman]

I don't think so. My local one just advises on pacing etc.

 

[andyguitar]

Does anyone have any knowledge / experience of such services in other parts of the country having medical input for patients ?
I wonder if I'm missing our purely due to my postcode ..

Pretty much the same service everywhere. But don't forget you can still consult your GP and ask to be referred to someone else. Neurologist for instance.

 

[Emmarose47]

What would I say the neurologist is for ?

 

[andyguitar]

Depends what sort of symptoms you have. You ever get headaches? Migaine maybe?

 

[Celandine]

If orthostatic intolerance/POTS is part of your symptom set you can ask to be referred to one of the doctors on the POTS UK website. Those doctors will likely be much more aware of autonomic symptoms, MCAS, etc. In the UK, I've found its a blessing if you have POTS as it seems the only route to real medical help. https://www.potsuk.org

 

[livinglighter]

Hi @Emmarose47

The only service I am aware of that you could have received medical input from was the Royal Free Hospital in London, as an immunologist headed it. Of late this is no longer the case as the doctor has recently left the post along with other members of staff. Experiences at this service varied a lot anyway, with it not being all good.

Based on what I know, you can have comprehensive blood tests to rule out the possible autoimmune conditions and conditions causing similar symptoms. This was carried out in the immunology department.

You can be considered as having POTs and referred to a specialist.

You can be referred to an endocrinologist.

Sleep medication can be prescribed.

Meds for low mood and anxiety can be prescribed.

Unfortunately since the PACE trial, the above is what a lot of the fatigue clinics stopped offering and it was replaced with just GET and CBT.

You can ask your current GP to provide you with the above based on your symptoms, but I want to add I think seeing a neuroimmunologist is required as there could be inflammation involved. Myalgic Encephalomyelitis means widespread pain with inflammation of the brain and spinal cord (CNS), which is why it is classed as a neurological disorder.

 

[livinglighter]

What would I say the neurologist is for ?

You could say you want to check for POTS if you have the symptoms.

You could say you want to treat the inflammation the name ME denotes is present.

 

[livinglighter]

If orthostatic intolerance/POTS is part of your symptom set you can ask to be referred to one of the doctors on the POTS UK website. Those doctors will likely be much more aware of autonomic symptoms, MCAS, etc. In the UK, I've found its a blessing if you have POTS as it seems the only route to real medical help. https://www.potsuk.org

Please listen to this!

Orthostatic intolerance/POTS is nearly present in everyone with ME. If you do have POTS receiving help won't be such a battle as the condition is far better recognised and there is medical treatment available.

https://forums.phoenixrising.me/thr...-treatments-for-your-physical-symptoms.83150/

Your doctor may be unaware of what ME is, therefore is unable to provide the usual level of patient care we are accustomed to.

You will need to educate yourself via various sources about the underlying physiology of ME, and ask for the referrals you believe you need. On this forum there is a lot of information, so try to get your head around everything at your own pace. It is also possible for people with ME to have several medical conditions as you will learn from this forum.

Having a general understanding of the medical battle that has taken place about whether ME/CFS is physical or psychiatric will also help (I wish I had known this earlier), and what happened with the PACE Trial as to why the NHS currently offers GET and CBT.

https://www.bma.org.uk/news-and-opinion/long-covid-we-ve-been-here-before

In the UK we are slowly moving on due to the COVID-19 epidemic. Lots of people who have long covid have symptoms resembling ME.

NICE is carrying out new guidelines for ME/CFS. The PACE Trial was deemed unfit for purpose during the draft consultations. A prominent doctor involved left their post (refer to my post above). I think changes are to come eventually.
https://forums.phoenixrising.me/thr...-up-and-smc-gives-voice-to-the-deluded.81971/

Check out The ME Association which is a UK ME charity. They provide lots of information about the illness.

I’ve come across a UK occupational therapy group called ‘Physios for ME’ who look very good. They may be able to provide information that can help you access additional support.

I had a ME specialist physio at the clinic I attended who helped me access benefits as I can no longer work, etc.

 

[livinglighter]

****UPDATE****

See my new post here about requesting a referral to a neuroimmunologist.

https://forums.phoenixrising.me/thr...ferrals-to-neuroimmunology-specialists.83243/

 

[Emmarose47]

Thanks ....I asked my GP about pots today she said all my vital signs are fine ...did laying , sitting and standing ...
I asked her what the treatment is for it and she said nothing really ...
Water , rest , caution ...

 

[Celandine]

@Emmarose47 I would do a POTS test at home if I were you, just to make sure. It's easy and you can get a heart rate app on your phone. Also, not true that there's nothing that can be done. People take beta blockers or other medications like Ivabradine to lower heart rate. My daughter is on Ivabradine and it's been a real game changer for her. There are also vasopressors like midodrine that can help. I would urge you not to take the word of your GP who likely has very limited knowledge about dysautonomia/ME/POTS etc. . Even a quick read of the POTS UK site will give you more info than most GP's know.

I'm also in the West Country--in Devon-- and unfortunately down here the CFS service, if there is anything like that, is under the Bristol Bath group which is 100% psych based. They are CBT and GET all the way. I would avoid under pretty much all circumstances. My daughter and many other people in the area who have POTS or syncope see the fantastic Dr. Jamie Fulton at Derriford. He is NHS, doesn't do private, but you would have to have POTS or some kind of orthostatic intolerance to get a referral to him. He also is only allowed to cover a pretty limited area. We are right on the edge of that . He is the only NHS doctor who has been helpful and understanding down here.

Feel free to message me if you want.

 

[Celandine]

...but also, you just may not have POTS or orthostatic intolerance! Just urging you to do your own research and take your own measurements rather than trusting GPs. My daughter was at a point where she couldn't walk down the hall to the toilet and when we saw the doctor they only checked for orthostatic hypo(or hyper) tension. Never checked for POTS or looked at heart rate at all. When I finally diagnosed it myself and got in touch with her doctor she told me --"Oh, POTS is just another syndrome like CFS. There's nothing you can do about it." I was livid because that is patently not true. Had we listened to her, my daughter might still be bed bound with daily stabbing chest pain and headache and living in a darkened room. Instead, she is now on her way to finishing college and is already planning to go to uni next year (fingers crossed!)

 

[livinglighter]

POTS is still considered a new medical term having only been recognised within the last 30 years. As @Celandine has said there are a lot of treatments and loss of physical functioning assistance available.

I’m not very surprised your GP is misinformed about it. I think you should try to test yourself as suggested. This would be life changing support you are missing out on if it is the case that you do infact have POTS.

The other posts you have made suggest you may have some form of exercise intolerance, and that’s what is limiting you in being able to walk for long periods.

The NHS says POTS is common in people with CFS.

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

One of the symptoms of POTS is exercise intolerance.

Exercise intolerance is associated with an onslaught other symptoms which make you feel poorly. Of course, you may not have exertion/exercise intolerance but the only way to be sure is through physical examination.

What may be helpful is if you write down all of the symptoms you have ever experienced since falling ill with cfs even before diagnosis. Then matching your symptoms with other people diagnosed with POTS and the ones mentioned within various sources. It’s a neurological disorder so everyone’s symptoms will vary and symptoms may appear unrelated as Dysautonomia and POTS dysautonomia affects multiple parts of the body. Many differing symptoms is a hallmark of autonomic dysfunction.

I want to add it would be highly unlikely that CBT and GET will work unless any underlying physical conditions are addressed. The GET and CBT programme is based on the patient being deconditioned and not physically ill.

 

[Emmarose47]

@Emmarose47 I would do a POTS test at home if I were you, just to make sure. It's easy and you can get a heart rate app on your phone. Also, not true that there's nothing that can be done. People take beta blockers or other medications like Ivabradine to lower heart rate. My daughter is on Ivabradine and it's been a real game changer for her. There are also vasopressors like midodrine that can help. I would urge you not to take the word of your GP who likely has very limited knowledge about dysautonomia/ME/POTS etc. . Even a quick read of the POTS UK site will give you more info than most GP's know.

I'm also in the West Country--in Devon-- and unfortunately down here the CFS service, if there is anything like that, is under the Bristol Bath group which is 100% psych based. They are CBT and GET all the way. I would avoid under pretty much all circumstances. My daughter and many other people in the area who have POTS or syncope see the fantastic Dr. Jamie Fulton at Derriford. He is NHS, doesn't do private, but you would have to have POTS or some kind of orthostatic intolerance to get a referral to him. He also is only allowed to cover a pretty limited area. We are right on the edge of that . He is the only NHS doctor who has been helpful and understanding down here.

Feel free to message me if you want.

Thanks celedine
I'm in Bristol ...
I'll.look at pots and home testing
The CFS service have been v helpful re pacing and CBT for coping psychologically ...

 

[Emmarose47]

...but also, you just may not have POTS or orthostatic intolerance! Just urging you to do your own research and take your own measurements rather than trusting GPs. My daughter was at a point where she couldn't walk down the hall to the toilet and when we saw the doctor they only checked for orthostatic hypo(or hyper) tension. Never checked for POTS or looked at heart rate at all. When I finally diagnosed it myself and got in touch with her doctor she told me --"Oh, POTS is just another syndrome like CFS. There's nothing you can do about it." I was livid because that is patently not true. Had we listened to her, my daughter might still be bed bound with daily stabbing chest pain and headache and living in a darkened room. Instead, she is now on her way to finishing college and is already planning to go to uni next year (fingers crossed!)

That's so good to hear about your daughter so did she have all the features of CFS ? Lymph nodes Inc

 

[Emmarose47]

POTS is still considered a new medical term having only been recognised within the last 30 years. As @Celandine has said there are a lot of treatments and loss of physical functioning assistance available.

I’m not very surprised your GP is misinformed about it. I think you should try to test yourself as suggested. This would be life changing support you are missing out on if it is the case that you do infact have POTS.

The other posts you have made suggest you may have some form of exercise intolerance, and that’s what is limiting you in being able to walk for long periods.

The NHS says POTS is common in people with CFS.

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

One of the symptoms of POTS is exercise intolerance.

Exercise intolerance is associated with an onslaught other symptoms which make you feel poorly. Of course, you may not have exertion/exercise intolerance but the only way to be sure is through physical examination.

What may be helpful is if you write down all of the symptoms you have ever experienced since falling ill with cfs even before diagnosis. Then matching your symptoms with other people diagnosed with POTS and the ones mentioned within various sources. It’s a neurological disorder so everyone’s symptoms will vary and symptoms may appear unrelated as Dysautonomia and POTS dysautonomia affects multiple parts of the body. Many differing symptoms is a hallmark of autonomic dysfunction.

I want to add it would be highly unlikely that CBT and GET will work unless any underlying physical conditions are addressed. The GET and CBT programme is based on the patient being deconditioned and not physically ill.

Thanks living lighter this is v helpful

 

[Celandine]

@Emmarose47 Yes--She had pretty much every symptom going. Started with chronic sore throats, lymph pain, abdominal pain and spinal pain. Then chest pain, daily severe headaches, PEM from even the slightest activity, unrefreshing sleep, very very disturbed sleep/insomnia, severe sensitivity to light and sound, frequent urination, bone pain, excessive sweating, burning eyes, blurred vision and on and on. She stopped being able to read and could only rarely tolerate watching something on her laptop,. She spent at least 18 months lying in a darkened room day after day doing nothing. And with all this, paediatrics at Exeter offered her only Occupational Therapy. Not even anything to address the daily constant pain. Her energy was so limited that wasting it on CBT or OT seemed absolutely ridiculous and pointless. It was like they weren't hearing what we were telling them. When I suggested that a wheelchair might help her be able to do some limited activity out of the house they acted like I was the devil. Turned down the OT and went our own way like so many other patients. Because I work from home and was able to devote pretty much full-time attention to my daughter and researching ME and finding possible treatments AND because I started this early in her illness AND because we were very very lucky, she's in remission from ME. Still has POTS, but, like I said above, there is medication that can help with that. Still, just yesterday her heart rate was 148 just standing and she had to take a day off school just one week back in. But she's fully functional now. 180 degrees different than when she was really low, The resting day off actually restores her, unlike before.

I'll also say that for some reason I also dismissed POTS as being relevant to her for quite a while. I don't know why. The chest pain and headaches are a pretty good sign that there's hypo perfusion going on in the heart and head. Also that she was always showing me her purple feet after showering--acrocyanosis. I think I thought that you had to have syncope or pre-syncope. She did have those on occasion, but not all that often. She couldn't stand in choir for long or play her clarinet standing up and would get dizzy in the shower. (Turns out playing clarinet is a terrible idea if you might have POTS as it's like doing a constant valsalva manoeuvre. Daughter's illness took a distinct turn for the worse after a weekend woodwind residential where she was playing almost constantly.)

 

[Celandine]

Things that helped for her. These may not help anyone else. We tried loads of things that didn't help at all including most of the Dr.Myhill mitochondrial stuff (felt like putting gas in the engine of a broken car), lots of supplements both vitamin, mineral and herbal etc. I have cupboards full of failures! --

1) Taking over a year off education to just rest. Maybe if we had done this sooner she wouldn't have gotten so bad but there just isn't a way to pull your kid from school when she has normal blood results and you haven't yet figured out what might be going on.

2) One of the first things to produce some positive change was liquorice root powder. Lots on here about it if you search. Not good if you have high BP. Increases aldosterone which increases fluid retention and blood volume. Most people with ME have low blood volume. Daughter has been taking 1 tsp liquorice powder dissolved in a decent size glass of some kind fo plant milk every morning. I also add about 1/8 tsp salt to that as I know she needs sodium. Again--NOT good if you tend to high blood pressure! You have to follow this up by drinking at least 2L water throughout the day. Liquorice is also somewhat anti-viral for EBV, so may help with reactivations.

3) I read this piece over at Health Rising about Perrin Technique:
https://www.healthrising.org/blog/2...rin-point-ray-perrin-me-cfs-and-fibromyalgia/
Perrin Technique had seemed ridiculous to me when I first heard about it, but something struck me in this piece and the linked interview in it. As one of the earliest symptoms my daughter had was spine pain and we happened to have a Perrin practitioner only 10 minutes away and there seemed pretty much no chance of harm I decided to try it with her. We went for over a year and I feel like it was an important part of her recovery. I don't think it's that helpful for people who have been ill a long time. The osteopath we saw said as much.

4) Diagnosing and getting treatment for POTS and autonomic symptoms. Ivabradine was the first thing tried. On its own this actually made things a bit worse, but when combined with a vasoconstrictor things really clicked into place. She is now on Ivabradine and Midodrine. Started out on Ivabradine plus I added in horse chestnut as the vasoconstrictor (Swanson 22% aescin timed-release are the only ones that worked) but now she's escalated to midodrine. Her POTS doc has also suspected mild MCAS as she does experience flushing and has prescribed a couple H@ antihistamines for that but we haven't seen any results.

5) Continuous combined pill birth control. Symptoms were off the charts during pre menstrual week and during her period. Had to try several before landing on one that seemed to suppress her periods. Even now she can feel when she would have had her period and she gets a spike in symptoms.

6) Late in the game when she seemed to be improving she got her first cold in over 2 years. This can be a really good sign if you have ME as many people's immune systems are so ramped up that they never get normal sick. But when she got that cold it sent all her symptoms skyrocketing and she was bed bound again for a time. The thing that popped her out was a two or three day course of low dose Diamox. I had ordered this myself from an online pharmacy some time ago and had never tried it but this seemed the time to give it a go. And boy did it work. It seemed to relieve intracranial pressure in a dramatic way. I could see the effects in real time standing next to her. It was bizarre and remarkable. Have never been able to reproduce this again, but it got her out of that situation. The next time she had a cold her symptoms did not go crazy.

Basically, you have to chip away at the symptoms you have. All of the above took a lot of time and was very slow. Inch by inch recovery. Also lots of the above has been tried by many other patients who have not had the success we have had. There also may have been a completely different combination of things that would have worked. Who knows. The rest, though, is the constant among almost all recovery stories.

 

[Emmarose47]

Thanks you so much for sharing ..
Such a story of recovery and hope
A long journey and you clearly did so much research ...daughter with a good momma ..
Amazing she is back at school and she deserves it too