How I'm feeling after my MS ‘body reboot’ - BBC Website

http://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis

ME and Rituximab get a very brief mention each. An interesting account of HSCT ("Stem Cell Reboot").

 

This article was also mentioned briefly on another thread. But it probably deserves its own thread because it's pretty amazing.

https://www.s4me.info/threads/stem-cell-transplant-game-changer-for-ms-patients.3067/#post-55439

 

Didn't realise that. I shall let the moderators decide whether it deserves its own thread or not.

Oh, I am a moderator. Well in that case I shall recuse myself from this decision in keeping with the high ethical standards observed at S4ME, and abide by the decision of my learned colleagues.

I shall now report myself and prepare to fall upon my sword if need be.

 

I wonder if any ME/CFS patients have tried this (not a recommendation).

 

Doesn't Paul Cheyney do something similar in Panamanian and Costa Rican clinics? But I don't remember reading any of the results.

 

In a past life i was registered nurse in a past life, working in autologous stem cell transplants for patients with lymphoma and multiple myeloma. This is not the same procedure as Cheney by the way.

stem cell transplants involves stimulating the bone marrow followed by harvest of the stem cells which are usually frozen until ready to use.

Then the patient gets admitted to the hospital and gets 3-7 days of high dose chemo which can cause secondary cancers over the long term. This chemo will wipe the bone marrow and blood from white and red cells, and platelets. The patients will lose all hair and the mucosa, from mouth to anus will slough off, causing pain, mouth sores, nausea and vomitting, and diarrhea until the body can make another layer of healthy cells. Once the chemo is administered, the stem cells will be reinfused, and it usually takes from 14 to 21 days for the stem cells to become active again, and produce new blood cells. It means that for 3 weeks time, there is no protection against all kinds of pathogens, even the normal flora on the skin and in the gut. Patients usually need blood and platelet transfusions during that time. There will need to treat all infections as life threatening, and there is usually prophylactic treatment with antivirals and anti-fungals. There is a small risk of death from the procedure.

I just want to say that this is definitely no the same procedure as Cheney’s or what is being offered in aternative medicine clinics (whatever they do). The procedure i have described is no benign. There are long term implications from just going through this procedure (neuropathy from chemo is one, and risk of secondary cancer from chemo). I am not sure of the long term remission of the MS patients (i did not read the article). Many of my nurse colleagues said that if ever they had cancer requiring a stem cell transplant, they would not go through with it, preferring a most certain death to such a rigorous treatment.

What i described is an autologous transplant, where the patient receives their own stem cells. In the case of leukemia where the bone marrow itself is cancerous, then oncologists have no choice but either use a matched sibling or an unrelated donor’s stem cells that is optimally matched. This is even riskier than an autologous procedure, as there are usually major issues with graft rejection or commonly called ‘graft vs host’ disease.

 

The article claims that the procedure can stop MS progression for 5 years or so. It doesn't result in remission.

 

I have read the article. And this made me think. Ever wonder why the psychiatrists (and the insurance companies) (and the NHS) so desperately want to keep ME in the psych department?

 

She seems less positive than her articles soon after it was done. I read it as It doesn't seem that transformative for her although perhaps it's stopping her worsening with further attacks than actually about reversing the level of illness there. I was surprised at quite a lot of symptoms over lap - brain fog, tinnitus, the extremely heavy feeling in the limbs. I saw this picture on MS pathology and there is some overlap again to some stuff that's mentioned as possible in ME. In MS They seem to blame mitochondria for the energy issues and have inflammation established.

As a side I'm baffled as to why someone like Rona moss morris is all for respecting the biology of ms whilst doing her suppprtive psychological research yet seemingly ignores the biology of ME when some symptoms are so similar.

 

This study by Maes and Morris compares the two illnesses well: https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205

The overlap is incredible.

 

Have you ever called the National Multiple Sclerosis Society? In my experience, even when you tell them you have ME/CFS and not MS, they will still happily try to answer any questions and help connect you with services to the best of their ability. It's like a secret helpline for ME/CFS too, but don't tell anyone.

 

I think they wanted MS there too but darn it someone developed the CT scan.

 

Interesting how MS patients talk about fatigue:

"Fatigue - an overwhelming tiredness - is one of the most common symptoms of MS.
Fatigue in MS is not just an ordinary tiredness, like you might get at the end of a hard day's work. It's as an overwhelming sense of tiredness that often occurs after very little activity."
all sounds very familiar.............

https://twitter.com/user/status/988686270737145856

https://www.youtube.com/watch?v=kiprakCZ9OE

https://www.mssociety.org.uk/what-i...e_generic_info_tw&utm_campaign=2018M7202_0485

 

Yet you might get people with rheumatoid arthritis or lupus or hypothyroidism saying the same thing and it is unlikely that what is experienced is particularly similar- just that in each case it is not normal tiredness.


I personally see no real similarity between ME and MS. I think the idea that MS has been treated as psychiatric has been overdone. We have known about the specific neuropathology since the nineteenth century.

 

I'm not trying to say ME and MS are the same, just that the information on MS on the one hand shows similarity with several symptoms (I didn't know they got the fluey feeling too) and yet the way they are presented (to the wider public) are perceived/received very differently.

From another MS site:

"Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.

Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life."

and yet on the NHS page for CFS:
"Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness."

eta: it seems they also had their own CBT/GET trial except it was called FACETs and appears to have been well received https://www.mssociety.org.uk/ms-new...evelop-effective-fatigue-management-programme

 

I know someone who got a stem cell transplantation end of last year, and I have to say I was never sure he would survive. Some 'neighbors' of his died due to common infections. He made it, but it's certainly nothing easy.