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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Nobody's Coming

This is what my partner would say in the earliest days of their "crash" last December. We were both waiting for the alarm bells to be sounded, and a doctor to come racing in to the rescue after hearing how severe their condition was, ready to help. But nobody was coming.
I've been really... distraught, recently, about how hard it is to find any medical professional willing to help. I spoke to M's GP last week, and she seemed almost confused that they weren't showing any signs of recovery. Almost embarrassed maybe, that nothing she's done (if you can say she's done anything) has made any difference, she turned it round on me. She started insisting on seeing M, coming to the house to do a physical examination and blood tests. I asked what for, and if she had any ideas or anything particular in mind, and when she had no good reason, I explained, yet again, why that would be harmful for M. They can crash for a whole day if I accidentally clink a glass, it's not worth the risk of having a doctor come in, turn on the lights, move them around, ask them questions, take blood. It could cause a major setback to their recovery for no good reason. She then said "I'm starting to get a little uncomfortable speaking to you- I haven't seen or spoken to Mina in months, you won't let me, and this puts up the warning signs of abuse." I mean, what am I even supposed to say to that? You haven't done a good enough job but instead of admitting that you're passing off blame to the one person actually advocating for your patient?
I also asked her (with as much politeness and decorum as I could) if she could refer them to or request a consult from a doctor with more understanding of their condition. The so-called "ME/CFS Specialist Service" provided by our local NHS hospital just sent me a YouTube video on leg stretches and asked if I'd heard about breathing techniques. They need a doctor who actually knows about ME, and the autonomic dysfunction that is particularly affecting them the past few months, and can prescribe medicine and treatments, not just throw different SSRI's and see what sticks.
She said no though.
So I've been trying to research NHS consultants on my own. I've already dropped £300 on a private specialist, but that appointment isn't until June and they can't live like this until then. But even this is no easy task, I search for doctors with an interest in autonomic dysfunction, chronic fatigue, POTs, but all the ones I find are outdated, have no contact info, all at different hospitals, different websites. Most it's unclear how to see them, if they even practice or take patients anymore.
Why is this so hard, where is the magic doctor that will swoop in and help?
The last thing the GP said is, "so what is M's general ability to do things around the house?" I said "what do you mean around the house? They're still bedbound, still haven't sat up, still need to be fed liquid meals through a straw, and have me help them use a bedpan. They lie in the dark and silence all day, every day, as they have for four months now." She seemed surprised, shocked even. Has she even been listening to me? Is she scared, because she doesn't know what to do?
I'm tired of having to be the only person putting any effort in. I turned 27 last week. I still have to work my full time job from home, while still waking up at 3am to feed my partner. I still spend all day researching, and reading forums, and asking questions, emailing, screaming HELP US into the void. And still, nobody comes.


It’s truly atrocious.
I’ve written about it much on my blog.
I remember in the beginning years, thinking, oh they are going to come running in when they find how bad this has been.

Then recently my family and friends were able to carry me on a medical tarp on a van to a dr in September. First time I’ve left house and come back without an ambulance in 4? Years. But, I was accused of dr of making this up. He told me husband to make me sit up in car ride home (not possible) and other things. He ordered a psych eval when I was so calm and centered and kind and focused. Instead of ordering a spinal mri. I lost the ability to walk and zero MRIs have been ordered in 6 years of this. So, even 7 years later, I’ve found they mostly do not care. And it’s opened my eyes to what is running THEM to have this type of reaction to real and obvious human suffering. It almost seems they are encouraged in medical schools to look away from our cases and those drs that do, are often criticized, scolded, fined, lose their licenses etc. so…. It’s certainly been an interesting journey.

My husband and I were forced into an unthinkable situation on our own for 7 years now. I’m not quite as severe as your partner. I’ve gotten a TAD stronger over years but I am bathed from a bed and in depends at times.

We have found it remarkably insane how few services are available to us. I just got home healthcare 3 times a week for first time in 7 years, but it’s very minimal and the nurse looks at me like I’m an alien. She said she’s never heard of ny condition. So, it’s just been bizarre to navigate.

I have found some things that have helped. Greatly. I was very near death in 2020 and these things helped bring me back (bedridden) to a higher quality of life. Unfortunately covid has knocked that down for me again past 8 weeks.

I’m not familiar with your healthcare system but ours are mostly dead ends here. And they just gaslight us and blame us for me getting this sick.

I’m not sure where to tell you to start but opening pathways snd methylation with a good hair mineral test and practioner can assist. These illnesses mess up so many of our detox etc pathways. Inflammation galore. Homeopathy has greatly assisted me as well (I used to think it was woo woo, turns out it can be very helpful for severely sensitive individuals with guidance). And transdermal vitamins (I use liquid vitamins in tiny amounts introduced very slowly). I have written somewhat about these things on here.

Thinking of you guys.
You are not alone.
There are so many of us out here as well.

Please stay strong and know and remember that healing is possible no matter what conventional drs are telling you. It’s quite upsetting I should add that she would imply abuse when you’ve given up your life to help care for your partner. Goes to show the level of insanity we are working with. It’s in every country too! You will read in me/cfs groups. Absolute negligence and ignorance on medical practioners parts.
I"m so sorry that you have to deal with this. And you're doing a great job.

I am in the US, but we have some similar version of the same quasi- indifference.

Its far too complicated, and there is no easy answer. so its too hard for the doctors, it seems. There is no cook book for this. No recipes, or instructions.

My doctor knew about ME, and about research at Stanford. So that is huge. I got a reasonable diagnosis, and he got me on LDN which has helped. Meanwhile, I get worse and worse, while some symptoms lesson and back off, new versions arise.

There needs to be some form of Increased Attention and Specialty Teams who take on difficult complex cases and stay with it. Yet this doesn't seem to exist.

so your doctor refused to refer you to anyone else who might offer more help?

There is a group of folks affiliated with Remission Biome...people doing medical research, and then they themselves got long COVID or have ME-like issues. They do alot of lying out possible fixes to try, and how one might approach it.

For me, as an older person, I wish my brain could do all this complicated thinking to figure out a plan of attack, but frankly I'm not cognitively capable of doing all that, myself.

So I find one thing which helps a tad, and I'm trying to just take the one thing consistently and rest enough and hope for an improved day.

I'm just thinking maybe the Remission Group might have some protocols you could try to plug into. And yes, it seems the doctors are just not going to help much.

From what i've Heard in the News with Carla and Millie I am fully convinced UK is the worst country to live in as a ME/CFS Patient. Not that its good Here in Germany, we're neglected Here too. But from what I've seen ME people are Not only neglected in UK but actually harmed.

Sorry for you and your Care Person.
I agree that most doctors haven't helped us, but many of us (myself included) have more than one illness. This makes help even harder than it was. Each specialist deals with his/her own specialty. A well-rounded Internist is even hard to find....medicine has changed dramatically since the years I started down this road.

Still, I do think most people, especially as we age, have more than one diagnosis that can be made. There are very few ME Specialists left....and I think burn-out is a big cause of this. Perhaps AI will help with research, I don't know. We as a group don't know....but there has been help for many of our basic needs (pain caused by the disease, new meds, vitamins that are helpful, etc.). I know that it's hard for you to see progress, but it has existed in spite of a no-cure situation. Feel stronger. Yours, Lenora

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