Fellow ME/CFS sufferer from U.K here

Rob Rainford

Active Member
Hi everybody,

My name is Rob, male, 45 and from the U.K.
Non smoker, rarely drink alcohol, eat a healthy diet and just slightly over my normal weight.

I could go into great detail but will keep it as short as I possibly can :)

In 2009 I caught what I thought was a head cold, after 3 months of it not clearing up I started to worry, took a trip to my GP who put it down as bad cold / flu and prescribed antibiotics, unfortunately they didn't work. Then the green foul smelling gunge started to appear from my nose and the headaches really started. More trips to the GP and more pills later I asked to be referred to the hospital where it was confirmed I had Chronic Sinusitis. (In between appointments I started to become exhausted and would sleep a lot) One operation didn't work to get rid of the infection and I had to wait another 12 months for the second operation. The gunge from my nose stopped but the tinnitus didn't.

from 2010 to 2012 I took a right hammering as this monster took hold. I caught what I think was the Noro Virus while out at a restaurant, the 6 other people I was with went home all perfectly fine even though we'd all practically eaten the same dishes. I've never projectile vomited before so much as I did that night.
After that night my health rapidly declined with aches, pains, nausea, headaches, fatigue, Inability to sleep properly. And for no reason the weight piled on and my stomach refused to work properly (Had to stay near the loo at all times)

More trips to the Hospital and GP have had little or no success.
The U.K has little or no information regarding research on ME/CFS or Leaky gut, non that I've found anyway. I'm sure glad I found this place!

The big question some may ask is "has he been formally diagnosed", well kind of, but only after I pushed my GP to be sent to a specialist. This was 12 months ago, A "Yes you have ME/CFS" verbally from the specialist, a few tests later, Cortisol, Vitamin D levels and I'm still in the dark as to what the next steps are. I've been basically told there is no help for me by my GP and to stick to my support group. I also asked my GP if she could sign a document allowing me to try LDN privately. She refused stating she didn't know anything about the drug. So, I've hit a brick wall. Am I being fobbed off??? Seems that way to me.
Anything that has the word "Syndrome" attached seemed to be shunned. That's my experience anyway.

My symptoms are as follows:

1) Tinnitus which gets worse the more exhausted I am.
2) Almost daily fatigue with aching joints.
3) Stomach problems which have me running to the toilet on a regular basis (Could be leaky gut???)
4) Mind fog.
5) Inability to get my words out in conversation. Sounds as if I'm drunk at times.
6) The inability to sleep. My partner has told me I talk and laugh in my sleep on almost a daily basis and wake feeling exhausted with sore eyes.
7) Constant Flu like feeling

Thanks for reading and a happy new year to everyone.
 
Last edited:

Sue Stevenson

Active Member
Hi there Rob,

It's a hard place to be in when you try to get help from the white coats and they're not forthcoming. Makes places like this site and forum doubly needed

Ahh, yes, fobbing off. We don't get no respect ... although things are changing now. There's much more research on ME, more funding, and I really do feel that we are ever closer to finding cures. I haven't believed that for many years until recently.

However, most docs have just enough knowledge about ME to make them a danger to us, and doc-visiting a traumatic experience. Be nice if that changed soon, eh.

Anyway, welcome

Sue
 

Empty

Well-Known Member
Has anyone any experience with pushdoctors?

it looks potentially useful, at least for a simple ailment to avoidthe journey and potential of catching something in the surgery.
 

Rob Rainford

Active Member
Hi there Rob,

It's a hard place to be in when you try to get help from the white coats and they're not forthcoming. Makes places like this site and forum doubly needed

Ahh, yes, fobbing off. We don't get no respect ... although things are changing now. There's much more research on ME, more funding, and I really do feel that we are ever closer to finding cures. I haven't believed that for many years until recently.

However, most docs have just enough knowledge about ME to make them a danger to us, and doc-visiting a traumatic experience. Be nice if that changed soon, eh.

Anyway, welcome

Sue
Hi Sue,

Now if the GP's I'd seen clearly stated they didn't have any knowledge of ME/CFS then I would have looked at other avenues earlier.
They didn't say a word. I had to ask for a referral to a specialist, very frustrating indeed.

I haven't noticed a change in attitude but then again I only ask to see one GP. I'm seeing a senior GP at the practice mid January, I'll let you know what he has to say as last time he suggested PACE. I pointed that I was once fit and active, now reduced to an exhausted mess, exercise did the reverse for me.....Silence.

It seems the NHS are only researching the effect of the illness rather than searching for the cause / cure.
So you can see, the wall gets higher the more I ask for help. Lack of funding or no funding at all seems to be the main problem.

I've given up on visiting my GP for help regarding this condition as they've already made it clear that they can't help me.
The consultation soon with a senior GP is to ask them for access to my medical history. The first thing I will ask is "Why do I have to wait so long when other counties give you almost instant access", (London gives you instant access) madness!!

And thanks for the warm welcome :)
 
Last edited:

Rob Rainford

Active Member
Has anyone any experience with pushdoctors?

it looks potentially useful, at least for a simple ailment to avoidthe journey and potential of catching something in the surgery.
Thanks for mentioning the site.
I've taken a look and the reviews on Trust Pilot gave it a positive. I've bookmarked it and will take a more in depth look tomorrow.
 

Empty

Well-Known Member
Thanks for mentioning the site.
I've taken a look and the reviews on Trust Pilot gave it a positive. I've bookmarked it and will take a more in depth look tomorrow.
No Problem. I have just noticed it recently being advertised on t.v. which obviously stands out here in the U.K. I really like the ad too. Not a crappy Doctor in a white coat and scope to be seen.
Having looked over the website on the computer, it does seem useful. Don't know how much the full charge is as it states you can talk to a Doctor "for as long as you want".

But a specialist service for people with M.E. like this to give them sick notes and to keep their notes up to date of infections etc. would be really useful all round.

I wonder if Dr. Charles Shepherd of the MEA (also a valuable source of information) has seen these tv adverts. It would be great if he could send them a purple booklet and collab with them.

Rob - Have you self tested for POTS?

I would simply request in writing a photocopy of all of your medical records. You are entitled to them without having to meet up with a senior G.P. Also I would suggest you record the meeting on a small recording device as it strikes me as peculiar (although it is always useful to have recordings of everything).

https://www.pushdoctor.co.uk/how-it-works/medical-records
 
Last edited:

Rob Rainford

Active Member
No Problem. I have just noticed it recently being advertised on t.v. which obviously stands out here in the U.K. I really like the ad too. Not a crappy Doctor in a white coat and scope to be seen.
Having looked over the website on the computer, it does seem useful. Don't know how much the full charge is as it states you can talk to a Doctor "for as long as you want".

But a specialist service for people with M.E. like this to give them sick notes and to keep their notes up to date of infections etc. would be really useful all round.

I wonder if Dr. Charles Shepherd of the MEA (also a valuable source of information) has seen these tv adverts. It would be great if he could send them a purple booklet and collab with them.

Rob - Have you self tested for POTS?

I would simply request in writing a photocopy of all of your medical records. You are entitled to them without having to meet up with a senior G.P. Also I would suggest you record the meeting on a small recording device as it strikes me as peculiar (although it is always useful to have recordings of everything).
Hi Empty,

Now I wonder if that site has someone who specialises in ME/CFS. I'll check them out and drop the question.

I agree with a specialist service but since my GP / GP's I visit know next to nothing about this condition I have no choice but to go it alone and hunt for all the information I can. You can be diagnosed in the U.K but that's where the help stops.

Have you informed Dr.Charles Shepard?, If he hasn't seen the advert then all involved should be informed IMO.

No I haven't self tested for POTS. My issues with balance came with the Chronic Sinusitis. I've had 24/7 ringing in my ears since 2009 which gets worse the more exhausted I am. It's the sleep deprivation that's the real worry for me. I've even had the CPAP machine I was using taken from me by the hospital as I rarely used it. I said it felt like I was chocking when using it, so that's the end of that then I guess.

I also found it odd that I couldn't automatically access my health records instantly. I've just been informed I need to see the Senior GP to access them digitally......Why!!!
That's a good idea regarding the recording of the conversations, thanks:)

PS: I've asked LDN research trust to help me out with LDN since my GP won't sign the consent form.
 
Last edited:

Empty

Well-Known Member
I don't really think there is anyone in the whole NHS who specialises in ME. But you can find a few helpful characters here and there.

No, I haven't directly contacted Dr.Shepherd. It was just a passing thought I have just had as the ME community is in such dire need and this ticks so many practical boxes that is fires up my inspiration as to how things could be... supportive, compassionate and knowledgeable.

My G.P. surgery is a hell hole of ignorant, cocky, overpaid, useless delinquents.

Dr.Hyde does skype I think and there are others such as Dr. William Weir in London. (Private consultations). Since ME is often misdiagnosed in the NHS, I think it is useful to have a thorough diagnosis.

Its pretty simple to self test for POTS and see what your heart and bp is doing when standing still. There is info on this in the resources section.
 

Rob Rainford

Active Member
I don't really think there is anyone in the whole NHS who specialises in ME. But you can find a few helpful characters here and there.

No, I haven't directly contacted Dr.Shepherd. It was just a passing thought I have just had as the ME community is in such dire need and this ticks so many practical boxes that is fires up my inspiration as to how things could be... supportive, compassionate and knowledgeable.

My G.P. surgery is a hell hole of ignorant, cocky, overpaid, useless delinquents.

Dr.Hyde does skype I think and there are others such as Dr. William Weir in London. (Private consultations). Since ME is often misdiagnosed in the NHS, I think it is useful to have a thorough diagnosis.

Its pretty simple to self test for POTS and see what your heart and bp is doing when standing still. There is info on this in the resources section.
I couldn't agree more as some GP's I've come across have been nothing short of hostile. What do you suggest?

Well, In other professions such as lawyers, accountants, engineers etc you have to keep up to date with the latest trends, know your stuff and take regular exams to continue. I have no idea why this doesn't apply to GP's.

I'm going to take your advice regarding thorough diagnosis. I was offered similar advice last year but decided to put it on hold until I'd been through all the head bashing with the NHS. Now that I'm at the end of the road with the NHS a private consultation seems the only way forward. Thanks!

I'll give the POTS test a try, can't thank you enough for the info.
Thanks again!
 

Tigerlily

Active Member
Delay in accessing your notes may be caused through time needed to remove psychiatric comments which can be removed before the patient sees them 'in case they find them upsetting'.
 

Empty

Well-Known Member
Delay in accessing your notes may be caused through time needed to remove psychiatric comments which can be removed before the patient sees them 'in case they find them upsetting'.
I don't think there is any medical justification for doing this from a diagnosis of cfs, which is not classed as a mental health problem in the nhs. Nor even with a diagnoses of depression (often misdiagnosed). Is there?

Would it take a foi request?
 

Empty

Well-Known Member
"I also asked my GP if she could sign a document allowing me to try LDN privately. She refused stating she didn't know anything about the drug. So, I've hit a brick wall. Am I being fobbed off??? Seems that way to me."

I don't think so, on this point. I think it is reasonable and responsible if she doesn't know anything about the drug, to not prescribe it.
 

Tigerlily

Active Member
In
I don't think there is any medical justification for doing this from a diagnosis of cfs, which is not classed as a mental health problem in the nhs. Nor even with a diagnoses of depression (often misdiagnosed). Is there?


Would it take a foi request?
I am afraid that it IS classed as a meantal illness by many in the NHS. I don't understand that last abbreviation.
 

Empty

Well-Known Member
In

I am afraid that it IS classed as a meantal illness by many in the NHS. I don't understand that last abbreviation.
Individual, ignorant Doctors may feel that it is a mental condition however it is not "classed" as one within the NHS as far as I know, unless it has changed again. I think it maybe under neurological? I forget.

http://www.meassociation.org.uk/2011/11/cfsme-not-a-mental-health-disorder-minister-for-welfare-reform-tells-countess-of-mar-21-november-2011/

Freedom Of Information.

ETA: CFS is classed as neurological but Neurologists waste patients time by not being up to date with the science:

http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Causes.aspx
 
Last edited:

Tigerlily

Active Member
Individual, ignorant Doctors may feel that it is a mental condition however it is not "classed" as one within the NHS as far as I know, unless it has changed again. I think it maybe under neurological? I forget.

http://www.meassociation.org.uk/2011/11/cfsme-not-a-mental-health-disorder-minister-for-welfare-reform-tells-countess-of-mar-21-november-2011/

Freedom Of Information.
I guess you have never seen the training videos for doctors regarding CFS. They can be found on PR.

If the information can be classed as a danger to those classed as mentally ill it can be witheld.

Sorry but you seem somewhat naïve.
 

Empty

Well-Known Member
What I am getting at, Tigerlily, is I do not think that Doctors are legally allowed to withold medical information on the grounds of having a CFS diagnosis. In fact, it sounds absurd.



Please do reference the contrary.
 

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top