Complaint about Chronic Fatigue clinic?

[ArseInTheCoOpWindow]

I’ve been severely unwell with chronic fatigue. I mean severely. Unable to attend hospital appointments.

Now they are threatening to discharge me because I’ve been too unwell to attend a heart tracer despite the fact l had one ages ago for them.

Im severely unwell often bedbound. And yet the people l need support from are threatening to discharge me as I’m just too ill to attend the medical required.

what do l do?

This!

@Whatsortofrockareyou

I do not have ME.

I do have:
Peripheral neuropathy
Complex regional pain syndrome
Functional neurological disorder
Asthma
Endometriosis
Ibs
Dissociative disorder.

The only reason I do not have an ME/CFS diagnosis is because that is given only if the pain and or fatigue is explained by another diagnosis but my symptoms are very similar.

I have frequently travelled to hospital despite being extremely ill.

If the OP does not want to travel to hospital but wants to delay her appointment then I agree this should be possible.

I personally have never managed to get an NHS clinic to do this and so I was giving her advice on the presumption that she did want to travel.

I’ve got wheelchairs and lifts.

I was too weak to sit.

The relative who I booked a tail lift taxi for had cancer, heart and kidney failure, gout, major spinal problems, and severe asthma. He had a catheter as he could not make it to the toilet with help. We could, only just, get him into a wheelchair and then wheel him into taxi using tail lift.
If OP can get her appointment delayed then brilliant. But it is not a unique situation.

It's good practical advice for when she can go.

Having experience of other clinics, if you can't attend all they do is move things along to a later date.

@purplecaterpillar I have both cancer and ME/CFS. They are completely different conditions... and sadly only one of them is treated seriously. One person on one of my ME/CFS said they would actually prefer just to have cancer.... and very sadly I know exactly what she means. The outpouring of support I have had for my cancer diagnosis and treatment, and the way I have been treated by doctors etc. is a different world from the years I have struggled with ME/CFS.

@notsofantastic my relative as I posted had a long list of conditions. His cancer was actually the least of his issues. Although cancer is a generic term for many different illnesses, so its impact can vary greatly.

It sounds like you need a different type of wheelchair. There are specialist wheelchairs for people who are never able to sit up. There are even ones for those who can never support their own head. I understand this does not help you at the moment though.

Maybe it would be possible to get OP to hospital, given the right equipment. But for someone with very severe ME it’s extraordinarily dangerous to expend extra energy on travelling and could result in a big deterioration which could take years to recover from. It simply isn’t worth the risk.

I have a friend with mnd.

He has no control over most of his body now.

You need a full body support wheelchair like he has, not the kind that are meant for people who can't walk far to sit in,

I suspect they might be bespoke only, but I'm not sure.

That is if you want to go to the hospital appointment.

@purplecaterpillar but your relative didn't have severe ME/CFS though did they? I understand very well the scope of cancer and it's impact.

That is not what the NICE guidelines are for M.E clinics, because that is not how M.E works.

If you are having chemo you don’t develop more cancer by being moved.

OP do you have anyone to fight this on your behalf?
If not you may have to just wait and see if PALS will do anything. I know when I have been really ill (I have a rare chronic condition) I would have been too ill to fight my case with anyone, and I still had the energy to get to hospital in a taxi, so not as bad as you. It should not be the way, but sometimes when I have been too ill I have just had to let things go.

MND (while a terrible illness), also doesn’t work like M.E.

Can you be referred to a different centre @ArseInTheCoOpWindow , that might be the option . We discharged my daughter , with her agreement , from one CFS specialist clinic in London as frankly the therapies they were trying to use were doing her more harm than good .

"If you are having chemo you don’t develop more cancer by being moved."

@Whatsortofrockareyou that's the crux of it.

Yes, this.

@notsofantastic he had a permanent catheter as even with help he could not get to his ground floor toilet. He was bed or specialist chair bound.

@purplecaterpillar With very severe ME, if your heart rate rises by even the tiniest amount you can get worse. A lot worse. No wheelchair is going to enable you to transfer in and out, plus be transported, without raising your heart rate.

It’s outrageous that any clinic would discharge a patient for being too unwell to attend, there must be a way around this. I hope you are able to get an up to date trace done soon OP. I’ve heard of at least one woman being diagnosed with CFS when in fact she had congestive heart failure.

I’m interested to learn more about how CFS/ME can be life-threatening as I thought the whole point of that diagnosis was that there is nothing physically wrong, as far as our current state of medical knowledge goes, to explain the debilitating symptoms.

@SaintCrostaOfMollica

https://meassociation.org.uk/2023/11/me-association-research-review-mortality-in-me-cfs/#:~:text=In%20May%202023%2C%20the%20ME,fully%20attributable%20to%20ME%2FCFS.

https://www.bbc.co.uk/news/uk-england-devon-67748453

@SaintCrostaOfMollica You’re out of date. Many biological abnormalities have now been found, including to the circulatory system, the immune system, and energy metabolism. You can read more here: https://www.meresearch.org.uk/research-shows-that-me-cfs-is-a-biological-illness-so-why-do-some-people-still-think-it-is-psychological-in-nature/

Re whether it is life threatening, yes it absolutely is. People typically die of malnutrition because their body simply loses the ability to digest. One recent case was Maeve Boothby-O’Neill, daughter of Times journalist Sean O’Neill. You can read more about her here:
https://www.bbc.co.uk/news/uk-england-devon-67748453

Thank you for your genuine and open minded post- it’s a breath of fresh air amongst the usual comments of ‘if X can do Y then you can too’ etc etc.

Thanks notsofantastic and Quercus5 I remember reading about Maeve at the time. I have an adult daughter with severe CFS and that’s what we were told at the Royal Free fatigue clinic, that because her symptoms were medically unexplainable CFS/ME was the only diagnosis they could give.

I admit, I know very little about CFS but I have a severely disabled adult son so frequently have hospital appointments for him.

Our local GP will send someone (usually a paramedic) to do tests at home, so could your heart trace be done like that?

We then have virtually all his hospital appointments via the phone. The consultants seem to prefer that as well.

Could you do this?