Opinion on "ME/CFS Service", UK

[Cheshire]

Having now been " properly" diagnosed I had expectations that things might improve and that the ME Service might start giving me some sort of hope, support or treatment. Most of us with ME are forced into the situation where we have to become our own experts, so I was fully aware that currently there is no cure or even diagnostic marker. So it was not like I expected miracles, but I did expect more than I got. So what did I expect after dragging myself on a forty mile roundtrip? I expected to have access to a specialist consultant like other people with neurological conditions. I expected to be able to have access to things that some people in the ME community have found helpful such as B12 injections or melatonin to help with the severe sleep disruption and unrefreshing sleep. I expected there to be health care professionals who were at least as well informed as I was on the latest research on possible causes and possible treatments, so that a little hope might be injected into the disaster that is now my life.

https://www.careopinion.org.uk/opinions/422141

 

[Valentijn]

I think this is a very important point, in that patients should be entitled to symptomatic treatment by the relevant specialists as a fundamental function of any health system:

I expected to have access to a specialist consultant like other people with neurological conditions. I expected to be able to have access to things that some people in the ME community have found helpful such as B12 injections or melatonin to help with the severe sleep disruption and unrefreshing sleep. I expected there to be health care professionals who were at least as well informed as I was on the latest research on possible causes and possible treatments, so that a little hope might be injected into the disaster that is now my life.

Instead I was made to feel like I was being unrealistic and argumentative.

I did get quite excited one time when I got to see the GPWSI (gp with special interest), because I thought I was going to be able to ask for a trial of B12 injections. No, wrong again! Silly old me! This is not a prescribing service, this is just a diagnosing service I was told.

And a very good argument in favor of getting rid of the bullshit CFS services, even the ones which aren't actively doing harm, but are still failing to provide meaningful help:

I feel that the service actually damages our chances of getting help possibly from consultants in other disciplines such as neurology, or infectious diseases because they say that we are already being taken care of and "looked after" by our own ME Specialist Service.

 

[chrisb]

I can understand that if a service has nothing useful to offer it might be best to offer nothing.

What I do not understand is the way that patients suffering from clear, but unknown and poorly understood, illness should simply be pushed out of the door. Any serious attempt at health provision would at the very least have arranged regular follow up appointments, even if only annually, to follow the course of the illness and try to understand its likely outcome.

I regard the failure to do this as negligent.

 

[Mithriel]

The frustrating thing is that we have known what to do for years. Nigel Speight has said that many of his patients improved or recovered. The great medical secret - let people rest as much as they need.

So give them advice - even call it CBT!!! - to organise their life, give them tips on how to even out their energy usage, like the ones Mark Van Ness gives (even after all these years I learnt something when he suggested packing everything perishable into one bag then you just have to unpack that one when you get home from shopping)

Help them with benefits or time off work, school or whatever, work with a well informed social services department. They could emphasise to new patients that not pushing on at the beginning could save years of ill health.

Get wheelchairs, get OTs involved, give people permission to be sick, treat them symptomatically and for comorbidities. None of it is expensive compared to drugs for HIV or other things and could save the country a fortune in lost income and payouts of benefits.

And this has been available knowledge for at least forty years!!!

 

[Arnie Pye]

From the quote in Cheshire's post https://www.s4me.info/index.php?threads/opinion-on-me-cfs-service-uk.925/ :

I expected to be able to have access to things that some people in the ME community have found helpful such as B12 injections

People with Pernicious Anaemia (an inability to absorb vitamin B12 via the gut that can/will kill if the patient doesn't get regular injections), a condition for which testing is unreliable, are often told that they can't have more B12 injections than one every three months. Pleading for more injections is sometimes met with the comment from doctors that the only reason patients want more is because vitamin B12 is addictive (which is nonsense!), so therefore they can't have more for their own good. Patients attending a day early for their three monthly injection have been refused it by nurses and told to make another appointment because they can't have the injection early.

Doctors allegedly "believe in" pernicious anaemia and vitamin B12 deficiency, and yet they still treat the patients like shit. So, much as it pisses me off to say so, I'm not surprised that doctors don't "believe in" B12 injections for ME and CFS. Note that the ampoules are only about 55p each, so doctors can't even complain that the treatment is expensive.

In the UK injectable B12 is prescription only. In many countries in the world it is available over the counter. The clued up patient in the UK starts buying their own B12, needles, syringes and sharps boxes online so they can have whatever B12 they need. Patients may need to experiment to find out which form of B12 works best for them - cyanocobalamin, hydroxocobalamin or methylcobalamin. I'm not sure if adenosycobalamin is available in injectable form.

A scary video on the subject of B12 deficiency, but worth watching :



Edit : Added "(which is nonsense)" after the word "addictive".

 

[Trish]

The frustrating thing is that we have known what to do for years. Nigel Speight has said that many of his patients improved or recovered. The great medical secret - let people rest as much as they need.

Back in the 1930's, when my father took a long time to recover from an infection, he was ordered to take a rest cure by the sea for several months.

Later he had recurrences of what the doctors then told him was a recurring virus. Each time he was put on bed rest until he recovered which sometimes took months. In between he was fully fit and healthy.

I have no idea whether he had ME or several bouts of PVFS. My point is, doctors knew that rest was the best medicine.

How times change. When I got ME I was lucky to get the GP to sign me off for more than a week at a time.

 

[Barry]

Whoever Flos is, they've written a stunningly good piece. The title should really be "ME/CFS Disservice".

 

[Barry]

I went on to ask this GPWSI if they knew of any trials with which I could get involved. The only one that they could suggest was one involving the donation of my brain after my death.

Pretty much sums up the whole sorry state of things.

 

[Cheshire]

Another person's experience:

 

[NelliePledge]

Yes there are over 20 comments on Facebook post mostly with similar experiences.

 

[Esther12]

I do worry that MEA can be too instinctively pro spending money on specialist 'care', when a huge amount of that money is wasted on people who do not help patients. Also, spending money on 'specialists' creates people who have an incentive to exaggerate their own expertise and ability to help patients, and this can cause harm in a wide range of ways.

 

[NelliePledge]

There's definitely a need to highlight the shoddy treatment people are getting from these so called specialist services. Otherwise there is an impression for GPs and the wider public that the NHS is actually providing a service so it is ok - maybe just patients having a moan because they have unrealistic expectations. Nobody can call how this person was treated acceptable so it brings the whole thing into the open.