Norway: Articles from TV2 about ME. Interviews with researchers as Fluge, Rekeland, Sommerfelt, Kielland and an interesting patient case

TV2 had a segment on the news tonight and an article on their website about ME sufferer Christine Moen who developed severe ME after mononucleosis.

She was badly treated by the health care system as ME patient.

In 2019 she got diagnosed with breast cancer and said when she received treatment for the cancer, it was like a switch turned on and she felt much better.

TV2 has also interviewed the oncologists Øystein Fluge and Ingrid G. Rekeland who says they've had several patients with similar stories at the hospital. They also say it's telling concerning the symptom burden of ME when chemotherapy makes ME patients better and they ask for more.

The cyclophosphamide trial is mentioned, but they say they are searching for other drugs with less side effects.

https://www.tv2.no/nyheter/innenriks/la-bortgjemt-og-hjelpelos-reddet-av-kreftbehandling/15157897/

google translation:
https://www-tv2-no.translate.goog/n..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

 

Unfortunately the article doesn’t mention what her specific chemo was.

 

Although the article doesn’t mention it specifically, I just watched the video report on Norwegian TV2 today and it showed she was given Rituximab (the Rx label was dated in 2016) which she paid privately, but it didn’t help her. Then she got cancer, and was treated with Taxol (Paclitaxel) + Herceptin/Perjeta (Trastuzumab and Pertuzumab), which she says cured her ME. From the labels it appears her chemo therapy was in 2020.

 

Have a look at the pictures in the article - name of medications written in her palm.

 

Surely you're not suggesting palm reading is a valid way of obtaining medical information?

 

groans


Back on topic, there is a long way to go to decide whether this can help other PWME with different subtypes.

e.g. what if ... cancer was causing immune activation leading to ME. Killing the cancer might allow the immune system to step down and ME to alleviate.

Or, cancer cells might allow EBV to proliferate and that could cause ME so when the cancer is gone so is the proliferating EBV.

Deserves empirical study but maybe this only helps a subgroup of people who have ME associated with cancer.

Someone with recurring virus like me may not benefit.

 

It could just be chemotherapy kills a lot of things, your cells, cancer cells, bacteria and everything else biological. Pump enough poison in and the hope is whatever it was causing the problem gets killed back if not completely while the human is still alive. The entire idea of Chemotherapy seems to be the human has more cells and can survive more damage than the thing you are trying to kill inside of them. The problem with Chemotherapy as a cure is there is also chemobrain and fatigue afterwards that can persist a lifetime so you might very well swap the cause. The consequences of chemotherapy can look similar to ME/CFS or they might actually be ME/CFS.

 

It gives me hope that the condition is reversible, for some anyway.

 

Do we know of any stories of pts recovering after cancer treatment elsewhere in the world? They all seem to come from Norway!

 

New ME article from TV2:

Researcher Anne Kielland calls the treatment of ME patients symbolic violence and say they are horrified by the results of their study into how ME patients are met in the health care system.

Professor Emeritus Kristian Sommerfelt is not surprised by the findings and says this is a cowed patient group.

Trude Schei from the Norwegian ME Association says the research confirms what they have been saying for many years.

Two Ministers from the Government were asked to comment, but refused to do so. A State Secretary promisees that the government will look into the matter

Quote from the article:

In the collected material, a picture emerges of a system that fails the patient group completely. There are doctors who say outright that ME is not a diagnosis they believe in.

- There are also doctors who meet patients with strong condescension. ME sufferers' encounter with system and society can be described as symbolic violence. They are stripped of all honor and broken down by the system, says the researcher.

She is concerned about what emerges in the study, and certain stories have shaken her.

- We have examples in our material that can hardly be described as anything other than pure abuse, says Kielland.



https://www.tv2.no/nyheter/innenrik...met-kan-beskrives-som-symbolsk-vold/15156030/

google translation:
https://www-tv2-no.translate.goog/n..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

 

TV2 has asked ME patients to send in pictures for the article, so this is how ME is illustrated. Thanks to everyone who contributed!

 

Good and a nice counter-balance to the IS drivel. I don't know if these are allowed to be shared but it would be a good tool to use against said misinformation.

 

It does meet all the conditions of statutory abuse, on the basis of an official position granting power over another, and willful negligence. Those examples don't even have to be sought, they're basically typical. Every single physician who mistreated patients this way would be outraged if it happened to them personally.

By symbolic does it mean part of a repeating pattern? Because symbolic has a less significant meaning in English, implies violence that doesn't actually cause harm, like using voodoo dolls or something like that.

Those are good photos.

 

sorry to be pedantic, but wouldn’t ‘institutional abuse’ be more accurate.

 

I read is as non-physical violence

 

Yes! That's the one. I knew it wasn't right but couldn't find the right word.

 

It is also possible to read between the lines that she seems to have done Rituxumab a few years prior to the above list. Non-responder, but could it have been a factor in the later response?

 

Another possibility which occurs to me (as a non-medic with very limited scientific knowledge) is whether it is possible that a latent cancer, or undetected pre-cancer pathology, may cause ME/CFS type symptoms in some people. If that were possible, then it could be that successfully treating the cancer is what alleviates ME/CFS symptoms in some cases. I’ve no idea if that makes sense scientifically.

Another anecdote n=1 FWIW: A friend of mine had lots of allergies/sensitivities/intolerances to various foods and other things for years but she did not have ME/CFS or chronic fatigue. After successful breast cancer treatment all her allergies/sensitivities/intolerances disappeared.

[edited grammar/typos for clarity]

 

Turns out Christine got better (or felt better) from a combo of cyclophosphamide and Epirubicin which she had before the three drugs mentioned above.

EC

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/ec