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?

Fellow CFS sufferer here. Given the nature of the illness I don't think it would be unreasonable to expect them to exercise a little more flexibility.

Research into ME/CFS has moved on by leaps and bounds in recent years, thank goodness. Still not enough for us to have effective treatments sadly.

Medical education hasn’t caught up though and it’s still pretty rare to meet a doctor who knows much about it.

Those of you suggesting wheelchairs or l should be discharged.

I was struggling with breathing as l was so weak. This is why l need the services of the CFS.

But because my illness was so very severe at that point, l was just too ill to travel. Do you really think l would not gave gone if l wasn’t able?

Any exertion made it more difficult to breathe.

What clinic? My DD has chronic fatigue and we got six sessions in Bath then discharged and told there's no other help or support available. If there is in fact long term help I'd like to know how to access it. My paeds dept locally just refused to see her.

@ArseInTheCoOpWindow I have severe lung damage so I know how hard it is not being able to breathe. I hope you have an oximeter?

People don’t understand. I think the whole ‘chronic fatigue’ name needs to go- it’s perpetuates the idea that it’s just being tired so people think “well aren’t we all”, “I’ve got 5 kids, I know what tired is”, “I had flu once, I know what fatigue is” etc. It gets really tedious.

Im sorry you are so bad at the moment- I hate the too weak to breathe thing, I have that when I have a crash.

It varies- you might not have one. We did for a bit, but nothing since I was diagnosed.

@Whatsortofrockareyou it really does not invoke that reaction in other people with chronic illnesses that causes fatigue. Being tired is different.

Is your DD over 16? Dr Claire Taylor is a private GP who specialises in Long Covid, ME and related conditions, and several people I know have found her helpful. Unfortunately her clinics get booked up months in advance though. www.drclairetaylor.com

Yeah it’s awful, and car journeys make it worse.

If you really are too weak to breathe surely you would be on portable oxygen?

No, no one seemed to think it necessary. My sats were a bit low, but not terribly.

Its a systemic weakness. It’s not about lungs. It’s about diaphragm muscles being weak.

I'm sorry - I've had experience of hospitals that have no support if you have any extra issues. I've seen that you've contacted PALS - they are fantastic at my local hospital and I hope they can find a solution for you. Wishing you all the best

My experience of cfs services is that if the patients are unable to attend for tests or appointments, therapy etc, then it is deemed that they cannot get benefit from the service and so they are discharged.

This is from the Devon CFS nhs clinic website

Due to limited resources, we are unable to offer long-term contact with patients, or to conduct home assessments. If patients have severe ME/CFS and are bedbound or housebound, it is appropriate for their GP to refer them to Adult Social Care and/or Community Rehab/Nursing Teams, with their agreement, as a care package and equipment may be required. We are able to liaise with these services to offer a combined treatment approach.

Sorry, also meant to add that

1. I am sorry that you are so unwell
2. absolutely you should not be discharged for not being able to attend a test as a one off. Contact the hospital PALS and quote the NICE guidance

If a person with ME/CFS misses an appointment:
• do not discharge them for not attending because it could be due to their symptoms worsening
• discuss why they could not attend and how the multidisciplinary team can support them.

I understand that. If your sats are reasonable, then you are getting enough oxygen, however hard it might feel to breathe. If your sats are too low you would get portable oxygen.

No she's 15 now.

I agree. Unfortunately, the situation the OP describes is not at all unique and almost certainly stems from outdated (or just plain wrong) information and a lack of training and knowledge about Chronic Fatigue Syndrome (CFS) as well as Myalgic Encephalomyelitis (M.E.).

Many GP clinics have not yet caught up with the new NICE guideline and the latest scientific knowledge. It would seem this is one of them.

I went in the end, and was accepted yesterday.

My lovely go referred me to the integrated therapy team as waiting for the chronic fatigue clinic was like ‘waiting to enter the pearly gates’ according to her.
ITT have been great. Bath lift, physio and mental health support. All in place in 3 weeks. Whilst l was still waiting for CF clinic.