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

[livinglighter]

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.

Yep, bias often runs from GP to GP and at times surgery to surgery depending on what is written about you.

I still don't have my medical records. There is always an excuse that their is an administration problem or something to that effect. What are they achieving by doing this I wonder.

I had that same problem it lasted about 3 months, I was given the run around on several occasions until I said I was going to file a complaint to the ICO, as they are only supposed to take a maximum of 28 days or something. I then got them within 3 days and was shocked, notes about possible personality disorders. I asked for an explanation of how they came to the decision, based on the specialist medical records saying my ME/CFS is physical. It couldn't be explained, so I'm now asking for it to be retracted. Plus making amendments providing my recount of events. Then I am changing GP's.

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

Send an email asking for it, that way you can track the length of time.

Thanks again, you've been very helpful.

No worries, the more info on this site the better.

 

[Sledgehammer]

1) I had that same problem it lasted about 3 months, I was given the run around on several occasions until I said I was going to file a complaint to the ICO, as they are only supposed to take a maximum of 28 days or something. I then got them within 3 days and was shocked, 2)notes about possible personality disorders. I asked for an explanation of how they came to the decision, based on the specialist medical records saying my ME/CFS is physical. It couldn't be explained, so I'm now asking for it to be retracted. Plus making amendments providing my recount of events. Then I am changing GP'

1) This is where we differ. I'm no pushover but tend to tread carefully not wanting to rock the boat for fear of total alienation. But I guess I might have passed that point already.

2) Personailty disorder. I'm guessing I will see just that type of 'diagnosis' in my records.
What they know now should make them backtrack on that.

 

[lenora]

Hello Everyone. There is no doubt that psychiatry has committed some serious errors along the way, abetted by physical therapy departments.

I also witnessed first hand the good that psychiatry did in giving bipolar patients a life to return to. This was from the very beginning of the medications used, the therapies employed and yes, even the horrible sounding ECT. Today many of those patients have ECT alone, get off the table and go on to a full day's work.

We all have choices and one of them is to find a doctor who is at least empathetic to our pain and illness. Even the best of doctors haven't been able to do much for ME until the last few years.

If I have spoken out of turn, then I owe each of you an apology. I just know too many doctors, in both mental and health areas who have really, really tried. It's the system that's mucked up. Yours, Lenora.

If you were only joking, then I sincerely apologize, but I didn't read it that way. Yours, Lenora.

 

[livinglighter]

1) This is where we differ. I'm no pushover but tend to tread carefully not wanting to rock the boat for fear of total alienation. But I guess I might have passed that point already.

For me, it's a bit easier to take that stance as I have NHS specialist records detailing how ME/CFS affects me physically and I yield it like a sword at the suggestion I have a primary mental health issue. But hospital records and GP records are not kept centrally so GP's weren't aware I had them until I presented them and asked for written explanations of why there is a difference in opinion.

My journey hasn't been smooth sailing because I was actually told by a CBT therapist I may have PTSD, so I went to have it looked into and no mental health issues were found, so again I use my discharge from mental health as another reason as to why anyone would think otherwise.

I also asked for all my full patient records from any health service I've used following my experiences since being diagnosed with ME/CFS.

But I feel like I breathe now as consultants and specialists have weighed in advising to pursue physical complications.

 

[Sledgehammer]

For me, it's a bit easier to take that stance as I have NHS specialist records detailing how ME/CFS affects me physically and I yield it like a sword at the suggestion I have a mental issue. But hospital records and GP records are not kept centrally so GP's weren't aware I had them until I presented them and asked for written explanations of why there is a difference in opinion.

My journey hasn't been smooth sailing because I was actually told by a CBT therapist I may have PTSD, so I went to have it looked into and no mental health issues were found, so again I use my discharge from mental health as another reason as to why anyone would think otherwise.

I also asked for all my full patient records from any health service I've used following my experiences since being diagnosed with ME/CFS.

But I feel like I breathe now as consultants have weighed in advising to pursue physical complications.

I never knew records were'nt kept centrally. You would think so since all services come under the NHS umbrella.

At least you've got the fighting spirit in you. It's something I used to have until I became unwell.
PTSD?, are you ex forces, no need to answer that, I'm not trying to pry just curious.

I envy you in the way you deal with all this. Wish I was the same :/

 

[andyguitar]

Is that something you've ever asked for, or has your GP ever suggested it?

It has'nt happened to me but i knew someone who looked into a private appointment with a neurologist. Very expensive.

 

[Sledgehammer]

It has'nt happened to me but i knew someone who looked into a private appointment with a neurologist. Very expensive.

I was looking into health insurance with you know who. It's only when I scrolled down did I see they don't deal with our problems. Now I'm informed on the neurological thing I might look again.

 

[livinglighter]

I never knew records were'nt kept centrally. You would think so since all services come under the NHS umbrella.

Different trusts - different records and hospital records are kept at the hospital. You can ask for the records though.

At least you've got the fighting spirit in you. It's something I used to have until I became unwell.
PTSD?, are you ex forces, no need to answer that, I'm not trying to pry just curious.

It's not easy but honestly, it is down to the help I got from therapists determined to say my illness is physical. Plus my family don't want to see me swept up by the injustice, so they help out when they can. But I try to avoid fighting as it's so draining. I only do it when I sense attempts to reframe my condition as not being physical.

I'm not armed forces, but during my CBT session, I was asked if I ever suffered from any past traumatic events. I answered honestly and I was asked to keep on talking......

 

[Sledgehammer]

Different trusts - different records and hospital records are kept at the hospital. You can ask for the records though.

Never knew that see. I only drift locally from one surgery to one Hopsital.

It's not easy but honestly, it is down to the help I got from therapists determined to say my illness is physical. Plus my family don't want to see me swept up by the injustice, so they help out when they can. But I try to avoid fighting as it's so draining. I only do it when I sense attempts to label me mentally ill.

I'm not armed forces, but during my CBT session, I was asked if I ever suffered from any past traumatic events. I answered honestly and I was asked to keep on talking......

We are in the same boat but I'm essentially on my own with this fight.
Therapist... Nothing of the sort around here. I tried the Chinese herbalist. Needles stuck in my back and some herbs gave limited relief, nothing more.

I've heard the stress argument many times over. Not going into detail I'd say it could well be the main issue with my condition if the possible trauma factor can be taken seriously that is.

 

[ruben]

I suppose that anyone whose been sick for years, even decades, without a diagnosis and they're basically abandoned, that this in itself could easily cause one to have PTSD too.!!!

 

[Sledgehammer]

Hello Everyone. There is no doubt that psychiatry has committed some serious errors along the way, abetted by physical therapy departments.

I also witnessed first hand the good that psychiatry did in giving bipolar patients a life to return to. This was from the very beginning of the medications used, the therapies employed and yes, even the horrible sounding ECT. Today many of those patients have ECT alone, get off the table and go on to a full day's work.

We all have choices and one of them is to find a doctor who is at least empathetic to our pain and illness. Even the best of doctors haven't been able to do much for ME until the last few years.

If I have spoken out of turn, then I owe each of you an apology. I just know too many doctors, in both mental and health areas who have really, really tried. It's the system that's mucked up. Yours, Lenora.

If you were only joking, then I sincerely apologize, but I didn't read it that way. Yours, Lenora.

Hi @lenora,

Here in the UK, regarding ME/CFS, we are up against a barrier where the NHS is concerned.
It's governed by guidelines. I'm certain there are good people in the service who want the best for their patients but it all about the guidelines. Deviating from them will probably have you dragged over hot coals and you may even find yourself on the path out of a job.

Now that the guildlines have been altered we may be looked at differently, by some anyway.
But I'm not holding any high hopes. We still have naysayers where this illness is concerned, not everyone will get on board overnight (Some will never accept this as a genuine illness at all) and it will still leave us with a mountain to climb.

We are not mentally ill. We are sick with a disease that is complicated.

 

[livinglighter]

Hello Everyone. There is no doubt that psychiatry has committed some serious errors along the way, abetted by physical therapy departments.

I also witnessed first hand the good that psychiatry did in giving bipolar patients a life to return to. This was from the very beginning of the medications used, the therapies employed and yes, even the horrible sounding ECT. Today many of those patients have ECT alone, get off the table and go on to a full day's work.

We all have choices and one of them is to find a doctor who is at least empathetic to our pain and illness. Even the best of doctors haven't been able to do much for ME until the last few years.

If I have spoken out of turn, then I owe each of you an apology. I just know too many doctors, in both mental and health areas who have really, really tried. It's the system that's mucked up. Yours, Lenora.

If you were only joking, then I sincerely apologize, but I didn't read it that way. Yours, Lenora.

Hi @lenora ,

I have nothing against psychiatry, I recognise well the good it does for psychiatric illness.

However, I don't have a primary psych illness at this stage and do not wish for my ME to be reframed as one.

Otherwise, I often encourage those in need to take it up for the benefits they will receive.

 

[livinglighter]

I suppose that anyone whose been sick for years, even decades, without a diagnosis and they're basically abandoned, that this in itself could easily cause one to have PTSD too.!!!

I mentioned this a while back to my family. I said I feel traumatised by not receiving any treatments to be able to live with such a debilitating illness.

 

[bensmith]

Same. I have significant trauma. I fear every day is my last with human contact, phone reading etc.

 

[Reading_Steiner]

I just called up and said I had a chronic disease similar to long covid and I need it to be diagnosed ( didn't mention it by name because of the stigma and the lockdown of the health services ), got a random doctor and he said that he can probably diagnose without even referring to a specialist if I do a blood test and it returns normal, so thats ok I think, but this is 5 years after the initial examinations though. Up to this point I thought it was pointless so I didn't bother, but the social climate is changing due to the covid and stuff, and I need the money, plus if any treatments do come along I don't want to have to wait to be diagnosed to be able to access it.

 

[livinglighter]

I just called up and said I had a chronic disease similar to long covid and I need it to be diagnosed ( didn't mention it by name because of the stigma and the lockdown of the health services ), got a random doctor and he said that he can probably diagnose without even referring to a specialist if I do a blood test and it returns normal, so thats ok I think, but this is 5 years after the initial examinations though. Up to this point I thought it was pointless so I didn't bother, but the social climate is changing due to the covid and stuff, and I need the money, plus if any treatments do come along I don't want to have to wait to be diagnosed to be able to access it.

Sorry, I’m feeling foggy today. Are you taking about a ME/CFS diagnosis?

 

[bensmith]

I just called up and said I had a chronic disease similar to long covid and I need it to be diagnosed ( didn't mention it by name because of the stigma and the lockdown of the health services ), got a random doctor and he said that he can probably diagnose without even referring to a specialist if I do a blood test and it returns normal, so thats ok I think, but this is 5 years after the initial examinations though. Up to this point I thought it was pointless so I didn't bother, but the social climate is changing due to the covid and stuff, and I need the money, plus if any treatments do come along I don't want to have to wait to be diagnosed to be able to access it.

Wow that is great! What country?

 

[Emmarose47]

This seems like a big game changer to me or am I missing something?

From the NHS website-

What was CFS classed as.before ?

 

[ljimbo423]

What was CFS classed as.before ?

I really don't know. Maybe somebody else knows and will post it.

 

[BrightCandle]

What was CFS classed as.before ?

Psychosomatic. Sufferers had the mistaken belief that they were unable to exercise leading to de-conditioning of the body leading to fatigue. They were thus treated with CBT to correct the mistaken thought process and graded exercise therapy to recondition the body.