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GP 'very unusual to have ME so bad for so long'. Am i the only one?

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
they just don't see that many housebound patients, they see the milder 'walking' cases.

It makes total sense that a lot of people like us just drop off the radar.

This is a huge part of the issue. Its at the point where some "ME experts", especially psychiatrists, have on occasion denied patients have ME or CFS because they are too sick. They mostly see the less ill, somewhat see the moderately ill, and rarely see the severe. Only the exceptional doctor sees the very severe. So their experience is skewed.
 

worldbackwards

Senior Member
Messages
2,051
I have decided to let him refer me to the ME clinic next year.
If you're happy to reveal your location, it might be wise to ask members for feedback before you resort to this. Some are better than others and, however much you might think you'll resist any rubbish, they do have a way of getting under your skin. Of course, once they've made you worse, it becomes clear to them that you 'were't motivated to recover'.
I have to tell people all the time that I have ME and depression, and that the depression is caused by the ME, not the other way around. Some people get this, but many just don't, and think that treating the depression will cure the ME. When i try and explain that they are wrong I can see them just thinking that I'm protesting too much.
I remember the old psychiatric 'heads I win, tails you lose' approach well. Ah, happy days…
Only the exceptional doctor sees the very severe
My doctor got involved with me when I was very severely affected for home visits. It started as backing up GET (which went as well as you'd assume), but once he saw the attitude of the therapists towards patients who clearly wanted to be well, both with me and other people attending the local Chronic Fatigue centre, he stopped sending people there and changed his whole outlook on the illness. Sadly, I fear that not many doctors are either as interested or open-minded as he is, but exposure to the severely affected certainly can make a difference.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK

Thank you Helen this link works!

If you're happy to reveal your location, it might be wise to ask members for feedback before you resort to this. Some are better than others and, however much you might think you'll resist any rubbish, they do have a way of getting under your skin. Of course, once they've made you worse, it becomes clear to them that you 'were't motivated to recover'.

I am in West Sussex, UK and the clinic my GP wants to refer me to is in Haywards Heath. I don't know much else about it, when he explained about the 3 treatments ( psychiatrist, CBT and GET) I wans't keen, and said no, he said he hoped I'd chage my mind and having talked it over with people I feel I need to give it a go.
But if anyone has any experence with them I'd be interesed to know.

Of course, once they've made you worse, it becomes clear to them that you 'were't motivated to recover'

This is what happened last time I tried CBT.
 

worldbackwards

Senior Member
Messages
2,051
I don't know much else about it, when he explained about the 3 treatments ( psychiatrist, CBT and GET) I wans't keen, and said no, he said he hoped I'd chage my mind and having talked it over with people I feel I need to give it a go.
But if anyone has any experence with them I'd be interesed to know.
Of course, once they've made you worse, it becomes clear to them that you 'were't motivated to recover'

This is what happened last time I tried CBT.

Not my neck of the woods, but I'd say go with your gut, it sounds rubbish. I know what it's like to turn to the NHS in desperation, but it really isn't going to be any better than you remember it.

But I'll happily bow to anyone with direct knowledge of this place.
 
Messages
15,786
@Raines - By the very definition of ME (the real thing, not Oxford fatigue) exercise is exactly what makes us sick. Deliberately doing a GET program in that situation would be quite perverse.

I think you should go with your first instinct. If you have ME, you have a serious biological illness. Denial and torturing yourself won't make it go away, unfortunately.
 

eafw

Senior Member
Messages
936
Location
UK
I am in West Sussex, UK and the clinic my GP wants to refer me to is in Haywards Heath ... 3 treatments ( psychiatrist, CBT and GET) ... he said he hoped I'd chage my mind and having talked it over with people I feel I need to give it a go.

I don't know the area but it sound like a fairly standard NHS "chronic fatigue" clinic. There is an off-chance that they may be able to help you to an extent IF you need support with basic management techniques and have any anxiety related issues. It may be a case that you can extract something from it, in that something is better than nothing.

However, remember you will be under the care of what is basically a mental health team for a neurological/immune disorder, and the NHS philosophy is to brush that (physical reality) aside as irrelevant.

Are you in a position to ask your GP why he is referring you to a shrink for a physical condition, perhaps enquire if that is what he suggests as the first line of treatment for MS, arthritis, heart disease and so on ?
 

eafw

Senior Member
Messages
936
Location
UK
To add, it might be worth contacting your local group

http://www.measussex.org.uk/

Don't know anything about them but thought this was interesting

"Locally, our society has been working with the Primary Care Trusts (PCTs) of both Kent and Sussex establishing specialist NHS services that are now operational."
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Welcome Raines :)

I have recently been told by a GP that my large body jerks are 'not M.E symptoms'

It hit me the other day that they don't know what severe M.E is like at all - they just don't see that many housebound patients, they see the milder 'walking' cases. They certainly need educating. In the meantime my GP is freaking out about the Mycolonus type issues and sending me to a neurologist - I don't expect any help from them.
Same here that that wasnt said by my GP but rather from my CFS specialist **sighs**. He tried telling me people with ME/CFS dont get mycolonus.. what is even more worst is he's known as one of the top ME/CFS specialists in this Aussie state!!. (He also believes in the PACE trial!).

I even got put into hospital at one point due to those neuro symptoms as a GP paniced on seeing all of them and rang an ambulance. Hospital neurologists when I had the worst results they ever saw to a Rombergs test (they were shocked, I went down so fast they missed catching me), they ended up dismissing me after I said that was a sign of ME/CFS. They didnt then want anything to do with me and sent me home while still unable to walk at all (I was actually wheelchaired out with a hospital wheelchair and sent home without any support).

To top that off the GP who had paniced on seeing my very abnormal reflexes, myclonus, constant tremors and other jerking and me falling over while just trying to walk around a corner into his room, he refused to ever see me again due to the fact it was ME/CFS causing my symptoms.

I suspect many patients with severe in the UK just give up visiting GPs or are too ill to get to see the GP so GPs assume they are better and get a false Idea of ME.

nods.. I ended up bedbound a lot again for a while while seeing one of my CFS specialists so didnt get back to him for over 3 years, when I finally got back to him he goes something like "oh, I thought you'd recovered as I hadnt seen you".

Its disturbing to think about all those being bedbound being thought by their doctors to have recovered! 95% of doctors wont even consider the possibility that the person got far worst.
.......

Raines.. unfortunately its all too common for those who are severe to stay severe. I do think the worst we are, the more likely we are not to improve much if at all. Some get progressively worst. I like a few others here did get a remission but got sick again, I not back to my full time bedbound state but are in a bad way eg housebound and cant leave home alone as I need now a wheelchair.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
To add, it might be worth contacting your local group

http://www.measussex.org.uk/

Don't know anything about them but thought this was interesting

"Locally, our society has been working with the Primary Care Trusts (PCTs) of both Kent and Sussex establishing specialist NHS services that are now operational."

Thanks for the great suggestion eafw
I sent them an eamil and got this back

''The NHS Sussex- wide CFS/ME Service based in Hayward's Heath was set up with our help in 2005 and has dealt with nearly 4,000 referrals since then. The dedicated team includes a specialist doctor, 2 physiotherapists, 3 Occupational therapist along with a psychologist and an administrator. The service is quite popular with ME/CFS patients and runs management courses in Mile Oak, Eastbourne, Hayward's Heath and occasionally Rye and Crawley.''

They are going to post me some more infomation.

I have to say if my dr had told me that it was set up with the help of a local ME group and had a specialist dr, and not insted told me that it was GET, CBT and therapy, I would have said yes.

Anyway it looks like it might be one of the good ones. (fingers crossed)
 
Messages
15,786
I think again I have fallen into the trap of being so desperate for some real help that I am raising my hopes before I have done all my research.
It's something we all do at first, I think. We're used to trusting doctors to help us, and it takes a while for it sink in that many doctors and therapists are not helping us at all with this disease.

We also shouldn't have to do research to find appropriate or even honest treatment. If certain researchers and clinicians weren't misleading patients, it would be a lot simpler for us, and we wouldn't have to spend so much energy dodging quacks :p
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've had dealings with the MEsussex group and my experience was that they were fully committed to the NICE CFS model and supporters of CBT and GET. Did hear that there were plans to open a rival group for Sussex and Kent but I don't know if that ever happened.

They are allied to AFME

" The Sussex ME/CFS Society is a constituted registered charity that works with the national patient organisations Action for ME and Association for Young People with ME."

http://www.measussex.org.uk/About-Us/about-us.html

and here's a report on one of their conferences which discusses the clinics being set up

http://forums.prohealth.com/forums/...ort-on-kent-uk-m-e-medical-conference.109405/

"It was shocking and depressing to find the majority of the audience approved and applauded everything which was said. They agreed when Clark said we should not say no to the psychiatrists. They welcomed the new services and clinics - even though they are to be headed by psychologists, they protested at those who dared to challenge. What on earth's the matter
with these people?"
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@Raines - welcome, and well done for not (hopefully) getting horribly depressed at messages telling you that it is common/usual to stay ill with ME. Unfortunately it is true, and the reason is that a bunch of psychoquacks, of whom one of the main offenders has recently been knighted :aghhh: have monopolised the discourse on the illness for decades, preventing proper funding, research, understanding and treatment of the disease we share.

You may find this thread about Graded Exercise Therapy helpful - a lot more helpful than actually submitting to it.

The CBT used is a kind of brainwashing to try to convince you that exercise will not make you worse.

UK doctors cannot be held entirely responsible for their ignorance, as prescribing CBT/GET is part of the guidance for doctors produced by NICE. They rely on a publicly-funded (that's funded by the UK taxpayers) clinical trial called PACE - claimed to show that these treatments work, but the research was so badly designed and reported, not to mention manipulated, as to prove nothing of the kind. There are many threads on it here.

Here is a thread on the shocking videos produced for UK GPs on ME. Be prepared to get VERY angry.

On the positive side, you may find that some of the non-NHS-sanctioned treatments that people here have tried will help you a bit. I certainly have, although I have never been severely ill (except very briefly). I have been ill for 19 years.
 

eafw

Senior Member
Messages
936
Location
UK
Anyway it looks like it might be one of the good ones. (fingers crossed)

Sorry Raines, seems as if they're the usual "NICE guidelines" followers. Thought it was odd that the local group had such influence, but looks like the local group are acting in the interests of GET and CBT and for the benefit of the clinic.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
It's something we all do at first, I think. We're used to trusting doctors to help us, and it takes a while for it sink in that many doctors and therapists are not helping us at all with this disease.

I think your right. I came to this conclusion with the therapist I saw and the CBT woman.
But I still have trouble believing it of drs.

I've had dealings with the MEsussex group and my experience was that they were fully committed to the NICE CFS model and supporters of CBT and GET.

ukxmrv thanks for your experience with the MEsussex people


Here is a thread on the shocking videos produced for UK GPs on ME. Be prepared to get VERY angry

I don't know what to say MeSci, those videos are horrific.
the worst part was when they said something like
''
your symptoms are controlling you rather than you being in control of your
symptoms
''
and thats almost exactly what my dr said to me last time I saw him.
I just sort of looked at him, I didn''t know what to say. there were a couple of other things too that make more sense having seen these videos.

I don't know if I can face changing drs again. and at the moment I have ATOS (UK benefit stuff) to deal with.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
I'm sorry you are in a difficult situation Raines and wish you good luck with ATOS and all the other challenges you are facing.

I must agree with others who have posted that you will likely get more practical help, help understanding your illness and sympathy on this site than from your current GP or a revolting NHS fatigue clinic.

Remember, when it comes to ME you are right (you are experiencing the reality of symptoms) and they are wrong (believing in a hypothesis which is at the very best unproven and appears idiotic and morally wrong to many patients).
OTH
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I think your right. I came to this conclusion with the therapist I saw and the CBT woman.
But I still have trouble believing it of drs.

ukxmrv thanks for your experience with the MEsussex people

I don't know what to say MeSci, those videos are horrific.
the worst part was when they said something like
''
your symptoms are controlling you rather than you being in control of your
symptoms
''
and thats almost exactly what my dr said to me last time I saw him.
I just sort of looked at him, I didn''t know what to say. there were a couple of other things too that make more sense having seen these videos.

I don't know if I can face changing drs again. and at the moment I have ATOS (UK benefit stuff) to deal with.

It took me many years to lose faith almost completely in UK doctors. I changed multiple times after being left alone at home in a near-life-threatening condition due to a misdiagnosis of 'panic attack' made over the phone. I wanted the doc to come out, but he didn't.

I went from the frying pan into the fire, ending up with a doc who stopped an essential medication without warning, discussion or explanation - I just turned up at the chemist to collect it as usual and it wasn't there. When I phoned to enquire, she was hostile and rude, and said that there was nothing in my record to say why I was on it. When I finally got a copy of my records I found that in fact 3 separate consultants had said that I could have it.

All my childhood records have disappeared long ago. No one seems to even care what has happened to them.

The last straws came in 2010, when I was seriously ill again and found myself being BLAMED for it. I told my friends never to take me to hospital again. I want to stay alive.

I have recently found, thanks to someone on here plus a radio prog, that the illness was probably due to a medication I had been prescribed shortly before the first severe episode. What I found out made the hospital treatment even more shocking. It could have caused kidney failure.

I have switched to another med, after being on the offending one for 7 years.

I did the research, and I asked for the new drug, and I said what dose. At least my current doc seems to respect my opinions.

Not a single doctor - GP or hospital doc - had made the connection between the previous drug and my serious illness.

My file of medical errors and other unacceptable experiences is a long one.

Are ATOS still involved in benefits? I thought they had lost the contract.